Sometimes In The Dark, Never At A Distance

TO LEARN THE BEGINNING OF OUR JOURNEY, scroll down to 
Day 1 for details and photos!
"God is sometimes a God who hides himself but never a God who absents himself;  sometimes in the dark, but never at a distance." 

Day 241:  Saturday, July 1, 2017   FINAL CHAPTER
A lot of tasks for the upcoming Fair, and so we are up early to start the day.  We pack up Hon's truck with boxes of leftover enteral feed supplements, the infamous banana flakes, the dreaded protein supplement, IV bags, syringes, bed pads and Depends.  With every carton taken out of the house and placed in the bed of the truck, another weight is lifted.  I can now see the corner of our family room again.  The only evidence that anything happened here are the marks in the carpet from where the boxes took up residence for over 6 months.
We hit breakfast at Tony's Restaurant.  Hon seems a little better this morning.  He eats quite a bit of his double-stack of pancakes...but no meat.  Good boy.
I head to the fairgrounds for 3 hours of cleaning/organizing the kitchen pantry, unpacking my fair supplies trailer and helping to set up the tables for the exhibit room.  It is hot, humid and the heavy lifting hurts.  I haven't been to the gym since Hon got sick.  I'm feel so out of shape.   Hon comes back from his errand to Abilatools to drop off the medical supplies.  From what little info he tells me, seems like it went well.  They are interested in the bed cushions that we used (previously given to my dad when he was in skilled care a year ago) to keep Hon elevated for the tube feedings.  It still warms my heart knowing that the items that got us through Hon's illness will now go to help others.
In the afternoon Hon and I head to Wyomissing to the Restaurant Store for our annual fair supplies shopping event.  I take along gift cards for Olive Garden, but it's only 2:00 pm in the afternoon and Hon doesn't want to eat that early.  Darn, because I'm starved.  Instead we head to the Farmer's Market right next door to the Restaurant Store.  There we purchase fresh fish - salmon, flounder, shrimp and scallops - so that Hon can cook his famous seafood sample foil pouch dinner.   I can see him perk up as he gives the fishmonger his order.  We also stop by the deli counter to get pot pie stew, baked limas and macaroni salad.  Hope garage fridge can hold all this stuff.   We really need that new fridge to come soon!
Hon doesn't disappoint.  The seafood samplers are delicious.  He eats 1/2 of his flounder and now has enough leftover for another meal.  His mood is getting better.  Amazing what home cooking - especially his - will do for one's mood.

The evening ends with a nice long chat with Hon's sister Connie and brother-in-law Noel in Australia.  He talks their ears off!  Makes me laugh to myself...I learn more about what he's thinking/feeling by listening him to talk to other people.  Here lately I'm fondly just referred to as the Pain in the Ass or Food Police.  He keeps teasing that he can't wait for me to leave for my convention so he go out and drink beer and have chicken wings.  I think I need a Nanny-cam!!
One of my favorite books that I used to read to my students when I was teaching was called Alexander And The Terrible, Horrible, No Good, Very Bad Day.  Alexander details all the bad things that happen during his day such as getting gum in his hair, dropping his sweater in the sink, having the elevator close on his foot, having to wear his railroad train pajamas, and the pet cat choosing to sleep with his brother, Anthony.  The running gag throughout the book is that Alexander repeatedly says that he thinks he'll move to Australia because life will be better there.  But in the end, he realizes that everyone has a bad day - even in Australia!   
When I started this blog, it was motivated by a quote I heard on the radio...
"God is sometimes a God who hides himself but never a God who absents himself;  sometimes in the dark, but never at a distance."    There were times during Hon's illness that I would have loved to run to a better place.  But that wasn't an option.  Like Alexander, despite all the annoying setbacks and disappointments along the way, we stayed the course.  In the end, we realized that everyone goes through bad days.  Bad things happen to good people.  While God doesn't bring the bad things, He gives us the grace and mercies each day to handle them.   He only asks that when we cannot see Him during the dark times, we trust that He has not forsaken us.  When I look back on the past 240 day journey, I am amazed at what God has brought us through.  Would I ask to do it again?  No way.  Do I think we have grown from it?  Absolutely.  God has used this journey to strengthen our lives in so many ways.  He has used our situation to set many positive things in motion. 
And so today marks the last chapter of this blog.  While Hon still has some routine medical maintenance to go through, we have reached the end of the long tunnel and are finally back in the light.  Our lives have been restored.  Perhaps a little lighter (163 pounds), perhaps structured a little differently (low fat diet means no bacon) but for the most part, Hon is back.  Back to eating, back to driving, back to mowing grass, back to teasing, back to laughing, back to being everything that makes Hon, well... "Hon".   God truly wasn't absent.  He was there every minute.  And this blog will be our testimony about all that He has done for us.  I hope that our story has provided inspiration, encouragement and hope for all of Hon's faithful followers.  Thank you to everyone for supported us.  We couldn't have gone through this journey without you.

Day 240:  Friday, June 30, 2017
I spent most of the night listening to Hon's breathing and trying to come up with a plan of what to do if he woke up this morning not looking any better than Thursday.  I leave for a convention in Las Vegas on Tuesday.  If he is going to have any adverse reaction to this procedure, I need a plan - fast.  He gets up and seems a little peppier, but not himself.  I give him some errands to do to try and get him moving around.  He texts me mid-morning at work to tell me all his errands are done and he's back home in the air-conditioning.  Too hot to do any more and he's feeling really tired.
I make the call to the Medical supply company to schedule them to come pick up "Fred" - aka the Feeding IV pole.  It feels very liberating to schedule the removal of the one last remaining item that is a reminder of this journey.  Fred will be leaving on Jul 5.  Since I will be out of town, we'll have to have his going-away party on Jul 4.  Fred has certainly been a stand-up guy, and was with Hon every day and night since early December.  He has become a permanent fixture in our family.  While I would like to say we will miss him, it's definitely time for him to move on to bigger and better things.  We wish him the best in his new pursuits to make others better.
When I asked the Medical Supply company about what to do with all the leftover enteral feed supplies, they recommended I call a group call Abilatools - http://www.abilatools.com - a non-profit group in Exton that takes donations of lightly used durable medical equipment such as wheelchairs, hospital beds, walkers, etc. as well as medical supplies.  They in turn makes those items available to others in need - for free.  After talking with co-owner Tracy on the phone, also someone with a disability - cerebral palsy - I am filled with a sense of purpose that once again God is using the bad things that happened to Hon to help others.   Now all the leftover tube feed, Boost drinks, IV bags, syringes, Depends and bandages can go to others who may not have the resources.   I make the appointment with Tracy for Hon to deliver the items to her home on Saturday morning.
It's Friday which is date night.  We head out to a favorite diner near Boyertown.  Normally Hon is all excited about their salad bar, but tonight he doesn't show any interest.  He has soup and baked chicken.  He looks very weary and not too much conversation.  We are no sooner home and he's sound asleep in his chair.  My concern grows.  The ear thermometer battery has died, and he has no patience with doing the oral thermometer tonight.  He is irritated with my hovering and tells me he's fine.  But I can't help watching him and trying to diagnose what's going on.  Sleeping in his recliner he seems jaundiced to me.  I remind myself that jaundice would only happen if the bile duct was blocked.  If the stents have moved, then he would have a fever and not feel good.  But according to him, he's fine.  I'll give it another day - if no improvement, I'm calling Penn.  3 days until I go out of town.

Day 239:  Thursday, June 29, 2017

Look, ma...no tubes! 
The day finally arrived.  Hon went into Penn for his scheduled ERCP procedure and while they were doing the scope to check the cyst and the stents, they also successfully removed his "J" tube - aka the feeding tube.  There is a persistent narrowing of Hon's bile duct which is bewildering the doctor.  Since it is still not cooperating, he replaced the one stent with two stents.

It was a bittersweet day.  We got our wish granted, but it was the last time we will see his specialist Dr. Chandrasekhara.  He will be leaving in July to go start his new pancreatic specialist position at the Mayo Clinic.  He has chosen a new doctor for Hon...Dr. Jaffe.  Don't know him from Adam, and we won't get to for another 3 months.  Since Hon still has the stents, he will need to have another ERCP.  That date is scheduled for Thurs Sept 21.  Guess we'll meet Dr. Jaffe in Pre-Op for the cocktail party before the main event!  I asked Dr C if the new doctor will be as nice as him...he just laughed and said yes.  We're going to miss his easy and friendly bedside manner.

Hon and recovery nurse discussing his scope results

Hon was a speedy patient today - his procedure was finished in an hour vs. the usual 2 hours.  I figured he made it through with flying colors.  But Hon didn't seem to come out of the anesthesia quite as good as in previous ERCPs.  He didn't have any physical reactions - no shivering or nausea - but he was just really subdued (and if you know Hon, that's a big deal!) and his throat was really sore from the scope.  We were supposed to celebrate the tube-free accomplishment day by going to the food truck court next to Penn, but Hon actually didn't want to eat (and if you know Hon, you know that is a REALLY big deal!).   So we headed home.  Hon was still and quiet, often closing his eyes (either that or it's my driving on the Expressway!).  While I had hoped to do a lot of errands in the afternoon, I hung close to home because he was still not himself.  He took a long nap and I quick hit the grocery store to get some of his favorites to make dinner - turkey, stuffing and green beans.  You could hear the gasps from the kitchen as the stove went into shock that it was actually being used.   You see, 2 weeks ago our refrigerator died, so we have to store everything out in the garage fridge.  So cooking - one of my least favorite activities - just got a whole lot more complicated when I have to go out and manuever around Hon's truck to get to garage fridge to get an ingredient.  Eating out has become easier.  Anyway, he ate all of his dinner, but still wasn't too peppy.  A check of his temperature showed perfect 98.6.  No nausea.  No pain.  So I just chalked it up to a rough procedure day.  He goes to bed early.  I'm out of practice of watching him and trying to decipher what is going on with him.  The feeling in the pit of my stomach is all too familiar and very unwelcomed.

Day 210:  Wednesday, May 31, 2017
We were so ready for this day.  Our follow-up visit with Hon's GI specialist - Dr. Chandrasekhara (herein after referred to as Dr. C) - to find out the next steps in Hon's recovery. 
Hon did his morning walk, went to PT and came home to take his shower.  When he came out, I noticed that the area around his feeding tube was all red and swollen.  This was discouraging because we had taken such good care of that area with daily cleaning and Neosporin.  Hon then tells me that he also has a lump there.  Not a good start to our doctor visit day. 
He takes his temperature and it's normal, so I am somewhat comforted that he doesn't have an infection, but the area looks bad.  Hon says it's been like that for 2 days.
The ride down to Philadelphia is easy and uneventful.  We entered Penn Medicine building with anxious anticipation.  Hon had done all the things asked of him at the last visit:  consistently eating 3 meals a day, gained weight (but not too much), and got great blood work results.  Now we are hoping to hear that the days of tube feed can end and the tubes can come out.  We were so anxious that we arrive an hour early! 
Hon passed the vitals check with flying colors...perfect temperature, blood pressure, respiration, and oxygen level.   Unfortunately the doctor was behind schedule, so the waiting was long.  Finally we get back into the exam room to wait some more.  A different doctor - with another really long name so he said to just call him Dr. O - came in without Dr. C.  Turns out Dr. O is a Fellow and shadows Dr. C. one day a week.  He did all the preliminary questions and examined the swollen area around the G tube.  He told us that we shouldn't have been covering that area with the gauze pads because that will irritate the skin.  I question that because the nurses from home care always covered the tube insertion sites.  Good grief, we've been doing that since December and now they tell us we weren't supposed to cover them? 
After another 20 minutes, Dr. C finally comes in.  He and Hon chat about his eating and his weight.  No mention about the good blood work results.  Dr. C takes one look at the swollen area and immediately says he doesn't like the look of that.  He instructs Dr. O to order antibiotics and gives us topical cream.  He called it cellulitis.  My Google search says:  "a common, potentially serious bacterial skin infection. Cellulitis appears as a swollen, red area of skin that feels hot and tender. It can spread rapidly to other parts of the body. Cellulitis might affect only your skin's surface. Or it might also affect tissues underlying your skin and can spread to your lymph nodes and bloodstream.

Left untreated, the spreading infection can rapidly turn life-threatening."  Wonderful.  Dr. C. does not agree with Dr. O's theory about the gauze causing the problem.  So we are uncertain now if we are to cover this site or not.

Dr. C trying to remove the "J" tube

Then Dr. C. says the words that Hon has been longing to hear - No more tube feedings.  (Hon looks up at the ceiling and whispers a "YES!" with a huge smile on his face.)  Dr wants to keep him off of tube feeds for 4 weeks, and if Hon maintains his weight, then they will be assured that he doesn't need the G tube anymore and they will remove it. 

Only 1 tube remaining - the "G" tube

Then as a bonus, Dr. C. determines that Hon doesn't need that drain (J) tube anymore, and he took it out - right there in the office.  It was a little touch and go at first - Hon experienced pain, but Dr. C finally got the balloon deflated (inside of Hon which kept the tube from coming out on its own) and just pulled it right out!  A little patch of Neosporin and gauze and that was that! 
No stitches.  Dr. C. said it'll close up on its own in a few days.  I secretly wonder if Hon will leak when he drinks anything!!
Then Dr. C drops the hammer - he's got a new job. 
Hon:  "Oh yeah?  Where are you going?" 
Dr. C:  The Mayo Clinic
Me:  Where is that?
Dr. C:  Minnesota.
Me:  (tearing up)  Oh no!  You're leaving??
Hon:  That's a hell of a drive for a doctor's appointment!
I am broken-hearted.  We finally found a doctor that Hon really likes, is personable and has such a great attitude, and he wants to go live in Minnesota.  We tried to tell him that the winters suck there...no luck.  He's really looking forward to the new opportunity because he will be able to specialize on just patients with pancreatic disorders.  I'm sure it's an excellent opportunity, but right then it was really tough to be happy for Dr. C. 
He assures us that he will do Hon's last ERCP (the debris removal, stent check, etc) procedure and will make sure he hooks us up with another specialist at Penn who will carry on the long-term plan.  I try to look happy, but inside I just keep thinking I can't believe we're losing him. 
Dr. C looked at Hon's CT scan from May 12.  The bile duct is still not open enough.  And he really doesn't have any answers as to why. It may be because the pancreas was so enflamed that the bile duct built up a lot of scar tissue.  If it's still too narrow when he does the next ERCP, he may have to put in 2 stents into the bile duct.
So, at the end of the day, it was an even score in Hon's ballgame.  2 runs - got one tube removed and no more tube feed.  2 outs - cellulitis and losing our new doctor.
Next ballgame - Thur Jun 29 for another ERCP and hopefully removal of the G tube.

We head home and decide to hit Longhorn for dinner.  Hon gets his Lemonade.  I go for the White Zinfandel.  We weren't able to have our favorite appetizer - firecracker shrimp - because they are deep-fried.  So we settle for salad instead.   Hon makes good food choices - sweet potato, pork chop and corn. 
Later that night Hon says, "I guess now 'Fred' (aka IV Pole) is just going to become a glorified coat rack!"  True, now "Fred" won't be needed.  But I think I'll let him hang out at our house until I see with my own eyes that the G tube is really gone.   Hon goes to bed, so happy that he doesn't have to lay elevated anymore nor does he have to listen to the Whrr-Whrr-Whrr of the IV pump all during the night. 

 















Day 208:  Monday, May 29, 2017 - Memorial Day
Tonight I honor my own Veteran - Hon. 
After graduation in 1965 he was immediately drafted into the United States Air Force at the height of the conflict in southeast Asia.  He did his basic training in Lackland Air Force Base in Wichita, TX.  Then he was stationed in Korea and in Viet Nam as a staff sergeant between 1965 and 1971, serving as a generator maintenance technician and an aircraft arresting barrier technician.  He got malaria and hepatitis.  He got the Bronze Star Medal in January 1968 for his heroism while engaged in hostile enemy action as a team guard leader in the City of Can Tho, Viet Nam.  The accommodation read that he "aggressively encouraged his men through the ensuring battle even though facing superior firepower".  However, he never wants to highlight this period of his life, but rather he chooses to remember the friends he made and anecdotal tales such as his post's pet mongoose who caught the scorpions and rats, eating Thanksgiving Dinner with President Johnson, and the lousy food rations. 
After his multiples tours of duty, he was assigned to Andrews Air Force Base from 1971-1973 where he was a generator plant operator and then finally was honorably discharged from the US Air Force.

Today Hon pushed the full wheelie garbage bin all the way up to the top of our long driveway.  And never missed a beat.  I can still remember the day back on February 18 when I bundled him up in extra shirts and coat and sent him out to walk the driveway to try and gain back all the muscle tone he had lost while hospitalized.  I watched him from the front door, so afraid he wouldn't make it.  So ready to run out there and help him.  He had to stop twice to catch his breath, but he did one trip up and back.  He had to take a nap afterwards - it took everything out of him.  But he's been walking every day ever since.  Now he walks 45 minutes each morning, doing laps around the inside of Coventry Mall.  His legs look strong and healthy - no more little bird-stick legs.
He fought battles over 50 years ago in a strange country.  And he's fought his biggest health battle in the last 6 months.  If there was a Bronze Star medal for facing superior challenges from difficult doctors, complicated diagnoses and debilitation, I would give it to Hon.  Some day he will choose to only remember the humorous parts and will tell anecdotal stories of his illness.  And of course that will include tales about the lousy hospital food.  Because, as we all know, it's always about the food with Hon!!




Day 205:  Friday, May 26, 2017
Hon went to his Physical Therapy today and was re-assessed.  This therapist says that he is really improving.  Two more weeks and they will probably discharge him from PT!  Hopefully the GI doctor will give us the same good news about removing the G-J tubes when we see him on May 31.
To celebrate we dined at Friendly's tonight.  But we vowed to have no ice cream, which is a really tough thing to do when you're eating in an establishment whose mainstay is ice cream!   Hon was really wishing for a turkey melt, and since he hadn't had any cheese in over a week, his Proxy Nutritionist (me) determined that it would be ok.  But when he read the menu, he was disappointed to find that the sandwich included bacon.  Geez...no ice cream AND no favorite sandwich??  What's a guy to do??  Nutritionist-Me tried to tell him that he could just remove the bacon, but in the end he opted to have a grilled chicken salad.  What a trooper!!
Tonight we should have had our bags packed and we should have been driving to Canada to stay with fair friends Mike and Judy in Balderson, Ontario.  But it's not in the cards this year...for one, Mike and Judy can't go this week and two, Hon would have to take "IV-Pole-Fred" with him.  As much as we like "Fred", trying to talk our way through Customs with an IV pole would have probably rattled my last nerve.  Besides, cooking and eating in a cabin in the middle of the Canadian wilderness would have been a real challenge and an unfair advantage to the others in the camp who don't have to subscribe to the no-fat; no-processed-meats, no-desserts plan.  So tonight post these photos as we just fondly remember the view of the peaceful lake, the sounds of the loons and the water lapping on the docks, and the feel of the wind in our faces as we traverse the lake in the motorboat.  The walleye and pike can swim easier this year knowing the Dobsons are staying in PA this Memorial Day weekend.


May 2016 - view from our cottage window




May 2016 - Hon with his Bass catch of the day from Mike Kmetz's boat. Had to throw him back (Bass, not Mike!) because Bass wasn't in season yet.



May 2016 - Hon casting a line in the early morning

Day 198:  Friday, May 19, 2017 - Dogwood Festival in Phoenixville.  Only problem was, Hon couldn't eat a darn thing on the festival grounds.  With his "no fat-no fried-no sausage" diet, pretty much everything available from sausage sandwiches, ice cream/waffles, pizza, french fries to hamburgers and hot dogs was off limits.  But he did get to chat with folks who he hadn't seen for a while, and he got to tell them his pancreatitis story.  Most were amazed at his weight loss.  They'd say, "I wish I could lose that kind of weight!" to which Hon quickly replied, "Don't go on my diet plan!!"  

So we walked past and looked at all the "not-good-for you" fair food, then went to a regular restaurant and had a "good for you" dinner food.

I've caught him trying to do yard work, but I think he's finding his limitations.  So when I suggested we hire someone to do much needed yard work, he was acceptable.  I made sure he understood it's not a forever thing;  just until he gains his strength back.   This is a big relief for me.  I'm not able to do yard work ever since a very bad case of poison ivy put me at odds with the outdoors.  No more weed pulling for me...and now with Hon recuperating, it's difficult for him to do all the outdoor work.
I feel like we're wishing away the year...constantly counting the days until the next dr appointment or the next test or the next procedure...counting down the days until we don't have to count down the days.  Right now we are counting down the days to the May 31 doctor visit.  Hon still thinks they will remove the gastric tubes then;  have to keep reminding him it might not be until June.  That will be another date to mark on the calendar, and more days to count down.





Day 191:  Friday, May 12, 2017
Hon continues to be a walking miracle.  He is eating 3 times a day, has quite an appetite actually.  Our new challenge is for him to NOT gain weight.  And that's a lot tougher than putting weight on.  Dining out presents many challenges.  We recently ate at the Eagle Brass Tavern in Gap, PA.  He was perusing the menu for several minutes.  Then he looked up, exasperated, and declared, "A whole menu of options and I can't eat any of them!"  A little exaggeration on his part, but it does take us a lot longer to order now because we have to analyze the options and figure out what's healthy for him to eat.  It usually turns out to be chicken or turkey or white fish.   Although he does try to break back into the old eating habits...
"Can I have a hoagie?" 
No. 
"Can I have chicken wings?" 
No.  
"Can I have pizza?" 
No.  
"You're killing me!"
No.  I'm trying to keep you alive.


Hon has a full month - complete blood work on May 1 and a CT scan on May 12, followed by GI specialist appointment on May 31.  Seems like a fairly simple process.  Well, almost.  Blood work went fine, but never made its way to Penn Radiology's office for the CT scan.  So Hon shows up at 9 am only to be told that they never received his blood work and therefore they can't do his procedure.  The race then began to track down the blood work results before the barium he drank before the procedure ran out in his system.  Frantic attempts to call Quest customer service were thwarted when they told me that they couldn't give me the results - Hon had to call himself.  Damn HIPPA rules!  So Hon and the staff at the Radiology office had to go it alone while I waited on pins and needles at work.  The results were successfully faxed over just in the nick of time and the CT scan was done.  I have since signed up for Quest's online option for test results to be emailed to me.  A little after the fact, but now we're set up to be better prepared for the next time.
Around 3 pm I received an email alert from Penn Medicine that test results were available.  When I checked the Patient Portal, I was pleasantly surprised to see that it was actually the CT Scan Results already!  Now I didn't do very well reading the actual results report (a lot of medical terminology that is way above my pay scale!), but his GI Specialist doctor prefaced the report with this note.  We are now hopeful that we will be told that Hon can stop the tube feed when we go to the dr appointment on May 31.  Goal?  Feeding tube out in June!

Thursday, April 27, 2017
Sorry blog fans...I know it's been awhile since a posting.  But now that Hon is feeling so much better
 he's able to get out and about and see people in person, so the need to blog hasn't been as necessary.  But for those of you who haven't had the privilege of seeing Hon, here's what's been going on with him...He has been gaining weight and it now at about 160.
He has been religious with his walking routine - in good weather he goes to the township park; on the not so good weather days, he goes to the mall.  But he goes every day.
He has started his outpatient physical therapy at NovaCare 3 mornings a week...thank you Auxiliary friend Paige for the recommendation - Armand is his therapist!
He is eating 3 good meals a day - and looks forward to food again.  
He's still on the tube feed.
He's still losing his hair due to the prolonged lack of protein.
He drives, he mows grass, and he actually says, "I feel good"

We've had a lot of events in the last 2 weeks, and Hon looked forward to attending them because he was able to reconnect with friends.  Probably the hardest one, though, was the dinner meeting at Shady Maple.  This was like taking an alcoholic to a Beer and Wine Fest!  And I wasn't really with Hon for most of the dinner part because I was manning the registration table.  So I had a lot of "watchers" who I assigned to check up on what Hon's food choices were.  He enjoyed mingling with the other attendees and having them make a fuss over him.  And there was no need for the "watchers" because he did a great job.  Salad, soup and fruit for dessert.  
But the big test came last weekend...I was going to be away for 3 nights to attend a convention.  Now while I was away one night in January for Farm Show, I haven't been away from home since then.  Even though he was obviously progressing, I was still very reluctant to be away for so many evenings.  Thurdays morning I got  up and starting packing my car with all the convention stuff.  When I came back inside, I found that Hon had gotten up, made the bed, moved "Fred" out to the family room, replaced his tube feed bag, took his vitals and did his own glucose finger stick.  I knew right then that I had nothing to fear.  He was going to be fine.  He had taken back his well-being, and my hovering is no longer necessary.  I only texted him once while I was away because, as much as I appreciated the break away from tube feed schedules, medicines and worrying about meal choices, he needed a break away from me, too.  He treated himself to Chinese chicken and vegetables one night, had Christmas in April dinner at forever friend Diane's with her 3 children, and hit the local diner with older brother Gerrit.  And all the while he made good choices and kept up with his meds.  He took great pride in being independent again, and I was so proud of how he managed his own care. 

This Tuesday we finally got to go the Nutrition Consultation down at Univ of Penn.  Jung Kim, R.D. met with us for about an hour.  People asked me how it went, and all I could say was "interesting and frustrating".  Interesting because we learned some new things such as Hon's weight should only be about 142 lbs  But frustrating because this Registered Dietician's recommendatioins were completely opposite from the Jefferson R.D.  Yes, he's allowed to have eggs, cheese and peanut butter - in moderation (Jefferson said absolutely no).  He's to stay away from salads and fresh fruits and vegetables (Jefferson said eat all the fruits and vegetables he wanted).  No, he never should have been on the Vivonex tube feed because it's so elemental because it's super digested and he's really not getting many calories from it; there was another "step down" from the Jevity formula that gave him all the diarrhea and bloating.  And we should have had an ongoing dietician plan at Jefferson.  Well, yeah, that didn't happen.  That's why we're here.   This R.D. gives us this plan:  1) don't gain any more weight;  2) reduce tube feed to 16 hours a day; 3) eat 6 smaller meals a day instead of 3 large meals;  4) East healthy high protein-lean foods; 5) stop doing the protein supplement - get the protein from food intake (Hon was thrilled with this directive) and 5)  after his blood labs next week, his CT scan on May 12 and GI dr visit on May 25, if his inflammatory markers are down and his protein levels are up, she wants to stop the tube feed for 2 weeks to see if he can maintain his weight and nutrition.  If all the stars align, he can have the tubes removed.  As Pilot friend Alicia says, that's day will be cause for a big celebration!!  

The R.D made an interesting comment...as much as the significant weight loss has been shocking for many of us, it actually was a good thing that Hon lost weight.  It's improved his blood pressure and his cholestrol - so much so that he's been able to stop several meds.  It's reduced his belly fat.  It's reduced his pre-diabetic situation.  It's just not a diet plan he would recommend for anyone!!
So once again, God took something that was meant for harm and used it for good.  "For I know the plans I have for you...plans to prosper you and not to harm you; plans to give you hope and a future." (Jeremiah 29::11)

Now we have to go clothes shopping - this weight loss has put him in a new size range!
Hon wanted to go up to the firehouse Monday because they were making donuts (typically he is the dough mixer) and I think he really wanted to be back with his donut worker peeps.  Firehouse friend Tricia told me later that Hon had white powder marks all over the back of his t-shirt, his cheeks, his shorts ...all from the loving hands and arms that embraced him and hugged him because they were so happy to see him and to see him doing so well.  Nothing better than Kimberton Fair Donut love!!

Day 163:  Friday, April 14 - Good Friday
Hon has been a busy guy.  Wednesday he finished mowing the lower 1.5 acres.  While I'm not real happy about it, everyone keeps telling me that this is a good thing.  It's building his confidence, getting him out in the fresh air, exercise...it's just me having troubles losing my caretaker job now that he's getting back to being so self-sufficient.   Neighbor friends Russ and Mary Lou were kind enough to bring us back some fruit from their Shady Maple grocery store run.  They visited with Hon and got to be entertained by Smokey who was performing all his tricks such as hiding under the decorative rug in the family room. 
Thursday Hon was really on his own.  I had a meeting up in Centre Hall (near Penn State) and had to leave the house at 5 a.m.  Hon didn't really want to get up at 4:30 a.m. with me, so he was in charge of getting himself up, hooked up to the IV tube feed, vitals check and meals.  Noontime Angel Cheryl came over to do the meds and protein treatment.  Hon got invited out to dinner with his brother and Cheryl's husband (Hon's nephew) Steve.  I texted him on my way back from Centre Hall...
Me:  Just left the Park and Ride.  Still 2 hrs from home.  Enjoy your dinner out!
Hon:  Ok...do you want me to get you anything?
Me:  No, lunch was like dinner - stuffed chicken breast, mashed potatoes, corn, applesauce, cole slaw, roll, butter and chocolate peanut butter cake. I'm good!!
Hon:  Did you get me any?
Me:  I knew you would ask that!  No take out containers.  Next time.  Eat healthy tonight. No cheating.
Hon:  You know me.  I will do what I have to do.
And he did.  Had a grilled chicken sandwich with lettuce and tomato. 
Tonight I got home late from work - unfortunately seems like my life is getting back to normal, too!   Hon is all wound up to tell me what Smokey did today...shredded an entire roll of toilet paper off the holder in the powder room.  Plus he started working on the spare roll that was on the shelf.  We have no idea what brought that on - Smokey has never done that before.  Hon was quite tickled with the whole story.  I hid the spare roll in the vanity cabinet as Smokey watched.  I think he's plotting how to get that cabinet door open for Round #2.
Hon was all ready to go out to eat for Date Night.  We flipped a coin and the selection was the Pied Piper Diner up in Bally.  We chatted on the truck ride up to the restaurant.  He told me about his day - just did his mall walk, went and got his newspaper, and his brother stopped by to visit.  We got talking about a fair friend who recently lost her uncle.  The man had refused all medical treatment and therefore had a rather painful end to his life, dying at home.  I told Hon that the man had just lost his wife last year, and the family felt that he just wanted to be with her and didn't want any medical care to prolong his life.  Hon says to me, "Promise me this.  When I die, don't die right after me.  I'd like a little peace and quiet in my new home before you come back to harass me about what I eat!"   I wonder if God will put us next to each other when we sit at His banquet table in Heaven??
Hon's irritation with my "help" continued when we starting choosing our meals.  I tried to make suggestions.  He tells me to worry about myself.  Seems Mr. Independent doesn't appreciate my guidance anymore.  He eventually chose salad bar, half a spring chicken, mashed potatoes and chicken Florentine soup.  He told the waitress that he hoped it was a "young" spring chicken, and that he didn't want an old one with wrinkles.  She now thinks he's so adorable.  Hmmm.  He dove right into his food and he didn't say one word throughout the meal because he was so intent on eating.  It was like watching someone who had been deprived of food in captivity eating their first meal. I couldn't help myself in reminding him "no chicken skin" to which I got a look, but he did comply.  He made a healthy salad of vegetables and ate the entire plate.  He gave the mashed potatoes a big thumbs down, so he mainly worked on the 1/2 chicken (without wrinkles).  He also told the waitress that the cook needs to learn how to keep mashed potatoes hot without drying them out.  Not so sure she finds him adorable anymore.   It was amazing how much he ate.  I watched him and notice that his cheeks aren't sunken in anymore.  Of course, no dessert which is ok.  Neither one of us needs that.  We get home around 10 pm and we're both tired.  We do the first set of eye drops and then lay there waiting for the mandatory 10 minutes until he can get the 2nd set of eye drops.  We both fell asleep.  Even Smokey.  After all, shredding toilet paper can be exhausting. 


Day 160:  Tuesday, April 11
Hon is now officially no longer on home health care!  Nurse Victoria cut him loose on Monday.  Her parting words?  She never wants to see him again - and she means that in a loving way!  She even said we could call her any time we have questions (as long as it doesn't involve her having to call her office for info).   We are very grateful for all she did to support us during the lonely and sometimes scary times when we were searching for answers and were desperate for a listening ear and a compassionate heart. 
So today Hon called his Primary Care Physician to find out if they will write him a script for outpatient physical therapy.  He left a message.  Guess what - they didn't call back.  After 5 months of dealing with the medical system, I am not surprised.  Disappointed, but not surprised.  He will try again tomorrow.
Noontime Angel today was sister Joanna.  She sends me a text at lunch time...."Someone was mowing grass when I went to do his meds..."   As I drove out the driveway this morning, and glanced over the front acre of yard and I thought to myself, "I will have to try and talk Hon into letting someone else do the mowing for awhile until he gets his strength back."  So much for that idea.  The zero turn mower requires a lot of upper body coordination and endurance.  I know this because the one time I had to operate it, my arm muscles ached for several days.  So I didn't want him to take that on too soon.  But true to his stubborn Dutch spirit, he will find a way to do what he wants to do.  Just like when he practiced driving my car up and down the driveway to gain back his skills.  So now he knows he can mow grass, there will be no stopping him.  He only did the front acre, and told me that when he got tired, he quit for the day.  The back 1.5 acres will be done another day.
Tonight he was wishing for a hot chicken steak hoagie.  I bought him a 12" long hoagie, thinking he'd eat 1/2 for tonight and could have the remainder for lunch later this week.  Well, guess his little outing in the front yard with his zero-turn mower worked up quite an appetite because he ate the entire sandwich!  When I commented on this, he said, "I was hungry!!"
Hon is really liking this Mall Walking thing.  He was there first thing this morning and walked all the mall hallways - 3 times!  It took him about 45 minutes.  Then he took a ride down to his workplace to visit with Owner Jack, Office Nancy and Director of Operations Chuck.  They were excited to see him.  Office Nancy even gave him his company Christmas gift which she had been saving for him ever since December.  So we had Christmas in April...he got a nice hat (Hon says it'll cover his thinning hair!!), cash bonus, Wawa gift card and a half-zip sweatshirt.  How fun to open Christmas presents on an 80-degree spring day! 

Hon said they asked him when he was coming back to work (driving triaxle dump truck) - they even tried to bribe with a newer truck (the truck he usually drives doesn't even have power steering!)   When I asked what his response was..."I told them I don't know yet...plus I have to wait until I get my stomach tubes out."  So hopefully I won't have to worry about his driving heavy equipment for a few months!  But if the lawn mower breakthrough today is any indication, I know it's coming sooner than I think.
As I look out to our back yard tonight, I see that suddenly everything has blossomed.  And I reflect that's what is happening to Hon.  He's blossoming.  He had been hidden inside a winter cocoon - that protective wall that God had built around him during those painful dark days of illness.  And now, just like the daffodil bulbs, he's pushing through that wall and reaching for the sun.  I can't wait until the day that he is totally free from all the tube feedings, hospital procedures and doctor appointments and can soak in a normal life again.


Day 158:  Sunday, April 9
Hon had one of his best days since Feb 15 when he came home from the hospital.  He had made plans to go to St. Basil's (nearby Catholic church) Palm Sunday breakfast.  I agreed to go with because I told him we had a lot of friends at that church who have been praying for him - we have a lot of thank you's to do!


Greeted by Brian Bodick

As soon as Hon walked in, he was immediately surrounded by a lot of love.  Over and over again friends made their way over to greet him and to ask how he was doing.  They were all so happy to see him.  Friend Marlene even joked with Hon, wanting to know who he knows...because while all the sick people are listed in the weekly bulletin, only Hon gets specifically mentioned by name in the Mass!  God's love and the power of prayer were very evident as we stood in this place.  And his St. Basil's friends are the hands and feet of God who have been lifting Hon up in prayer for many months, without ceasing.  They are so happy to see him and praising God's goodness.  It was a very special time with this supportive group of friends and prayer warriors. 

Welcomed by Tony O'dorisio

Hugs from Dee Aquilante

Happy smiles from Pat Mitchell and Sue Bodick

Hon with his full plate and well wishes from Kip

Encouragement from Dave Mitchell

"Who do you know??" asks Marlene Brignola

He asked permission to have a small piece of sausage and a piece of ham.  Since we haven't had pork products since last weekend, I gave in. 
As we drove home, Hon talked about going for a walk.  Since Thursday he'd been walking indoors at the Coventry  Mall.  But today was supposed to be such a lovely spring day, that I suggested that he go to our local Township park and walk there.  He liked the idea and left right away to go walk.  When he got home, he got a phone call that his kielbasa order was ready and made arrangements to meet his connection at a Turkey Hill near Morgantown.  The weather had really blossomed and I could tell he was excited to break free of the confines of the house and go on a nice drive.  I'm so proud that he's taking his walking therapy so seriously.
When I got home from my 2 afternoon meetings, I found that he had been to the grocery store, made turkey meatballs for dinner, put the trash out, brought in the recycle container and did the dishes.  His energy level was high today and so was his mood.  Obviously since he had so much activity today, he didn't really get too much tube feed today.  But he has finally broke through the 153 lb weight obstacle where he's been stalled for over 2 weeks.  Today it's 154.5!
What's on the agenda this week?  Nurse Victoria makes her final visit tomorrow...I have to figure out how to get Hon a script for outpatient therapy since the nurse at his new GI doctor's office says they would not be the one to write that - we have to go through his primary care physician.  This is interesting since his primary care physician hasn't contacted him at all through this whole ordeal to even check on him.  Hon started to receive home PT as a result of being discharged to home health care while in-patient at Jefferson.  But he's no longer in-patient, so the new doctor's script would probably be declined by insurance.  Here we go again. 
  
Day 156:  Friday, April 7 - Date Night Returns!
For the past 30 years, Friday night has always been date night.  We pick a restaurant and we treat ourselves for having survived yet another work week.  But then in October 2016 after my dad died as a result of being struck by a car, date nights were suspended because there were just so many other things that needed to be done.  And then 3 weeks later, Hon was struck by pancreatitis and normal life just came to a screeching halt.  With his food limitations, I was convinced that date night eating out was gone for good.
But at 4 pm today I got a text from Hon that reminded me of the typical question I would get on a Friday night..."Where you taking me for dinner?"  He gave 3 choices... Friendly's, Giovanni's or Chick-fil-A.  The first one is a favorite -- Hon likes their chicken noodle soup and I like their grilled cheese hamburger.  We both share a Hunka Chunka Peanut Butter Fudge sundae.  Really all Hon could have out of that deal would be the soup, and how tortuous it would be to eat ice cream in front of him!  So that one was out.  The second one is our favorite Sicilian pizza and cheese fries place.  And that's just a pancreatitis flare-up waiting to happen!  So that narrowed down the choices, and with a grilled chicken sandwich option (minus the fries), Chick-fil-A was the winner.  You never saw anyone so excited about going out to eat.  I mean Hon, that is.

The Chick-fil-A trip was just the icing on an otherwise very busy day for Hon.  Kind of like that book, Where's Waldo?  He went to the Kimberton Post Office where he got to see post mistress Mary.  He stopped by the Judges' Office to pay for his annual kielbasa order (he'll be giving it all away this year).  There he got to see all his favorite women who work there.  They must have certainly made a fuss over him because he kept telling me how they were so glad to see him and thought he looked good.  Then he went to the Wawa to get his daily newspaper.  Ran into several buddies who were there on coffee break and got to "shoot the sh-t" with them.  My mother spotted him driving through the town and texted me to tell me how happy it made her to see him out and about. Then he went to the Mall in Coventry and walked for over 45 minutes.  He made it home just before 11 am to get his visit from noontime angel Cheryl and her grandson Anderson.  Smokey's fear of little people came down a notch today - Anderson was able to pet him.  He also gave Hon a fist bump, a hug and a kiss.  Progress.
It is a good feeling to know that he's gaining back his independence and "normal" life is creeping back out of the shadows into the light.

Day 154:  Wednesday, April 5 - Karen's Birthday
Normally we'd be planning a memorable, quiet birthday dinner at The Desmond in Malvern.  But since November, the normal things in our life have been elusive.  I'm told we have a "new normal".  And today was no exception.
The weather was beautiful - the first day when it felt like Spring.  The flowering trees suddenly popped into bloom;  the daffodils opened up again and were standing straight; and the grass just looked greener.  It was also National Walking Day.  And Hon took that very seriously.  He walked around the grocery store and up and down the driveway.  He managed to get me lovely flowers, some sweet birthday cards, and food for Smokey.   His sister Joanna was the noontime angel today, doing the meds and the protein treatment.  He had cereal for breakfast, a Lean Cuisine meal for lunch and for dinner - drum roll, please - a grilled cheese sandwich.  Now I know what you're all saying...."he's not supposed to have cheese!" .  Well the doctor told him on Mar 30 that he could start introducing eggs and cheese back into his diet.  And he decided my birthday was a good excuse to start today!  Of course this means he won't be able to have cheese for a while.  But he said it tasted so good.  Really living it up on my birthday!

Hon got a special package in the mail today.  His great-niece Courtney sent him a t-shirt from her college.  Hon was really tickled to get it and I had to stop taking photos of the 7 deer who were yards away from our back deck to take his photo with the shirt.  It was exactly the right size and exactly the right gift to send since he needs more XL tshirts to fit over his G-J tube!
Tonight he had special visitors...his brother Rich's granddaughter, her husband and their 3 children who are visiting from Kentucky.  Our house instantly turned into a flurry of little voices, little footsteps and a lot of busyness.  The Little People had taken over.  They were fascinated with the our house, our "treasure box" (aka Toy Box), and Smokey.  So they literally went from one thing to another.  Hon got such a kick of watching them and interacting with them.  Children just have a way of lightening the mood.  But Hon and I quickly realize that we were out of practice.  We haven't had little people visiting - other than Anderson - for a while.  Our toy box hasn't been touched in years.  We tired out before The Little People did!

So my birthday ended with playing legos with a 3-year old and eating my birthday dinner of a grilled cheese sandwich at 10:00 pm.
Oh well...it wasn't The Desmond, but it still was memorable! 
 
Day 153:  Tuesday, April 4
We wrapped Hon in his "saran wrap" film bandages this morning so that he could take a shower.  His tube sites continue to weep and have such a strong odor.  Even after he gets all cleaned up, it doesn't take long for the odor to return.  It's so frustrating and embarrassing for him.
He did a good job of eating today.  Cereal for breakfast, sandwich for lunch and turkey/filling/corn for dinner.  He prepared all his own meals.  But Smokey is not keeping up with doing the dishes.  Guess that job will be mine forever. 
HUP called my cell phone this morning and left a voice mail that Hon was to call to get the results of his tissue biopsy from March 30's procedure.  But when he tried to call back, he got stuck in the voice mail swirl and never did talk to anyone in person.  And no one called back.  By the time I could try, it was after 5 pm, and the voice mail options were even more complicated.  Guess we'll try tomorrow.  I' suspect that it's not bad news or someone from HUP would have been more aggressive about calling back.
Hon had an eye doctor appointment today. The eye doctor didn't recognize him and thought he was a new patient.  He got to play "Star Wars" as he calls it.  He has to wear this high-tech mask and the machine tracks his eye movements by displaying a series of lights.  He said he didn't do so well.  He notices that his peripheral vision isn't as good, and he's having trouble seeing the small print on the TV.   Heck, even I can't read that small print.  One more reason why I need to get him a large flat screen TV.  But doctor also said that his eye pressure was too high.  He already takes eye drops to correct eye pressure problems.  So they gave him additional eye drops to take!  I asked him if he explained what's been going on to the doctor.  He did, and the doctor stated that the eye presssure and vision problems could be a result of the pancreatitis and the inconsistency with which he was doing his eye drops (too many hospital visits!)  But rather than just telling Hon to get back on his routine of 2 drops in the morning and 2 drops at night, they prescribe a whole new additional drop medicine.   So now we have to do the original drops, wait 10 minutes, then do the other eye drops,  This will not work into our already packed morning mania routine. Hon had been trying to do the original drops in the morning by himself, but between shaky hands and feeling weak, he says, "it's not pretty!".

Fire Co. Auxiliary friend Cheryl got Hon some hardback fiction books from her church's flea market.  Hon has been plowing through all his reading material in record time.  Over the weekend he read 3 novels in 2 days!  So he was very pleased to get new books.  He started and finished 1 novel today.  Just nothing else to do!   Tomorrow he has to go get light bulbs since 2 lamps have burned out in our house.  He's getting back to doing a lot of his normal routine house maintenance which includes winding all the clocks and replacing lightbulbs. He's good help...I think I'll renew his contract, and maybe include bathrooms and dishes on his to-do list!!






Day 152:  Monday, April 3
Hon stuck close to home today.  He walked up and down the driveway, and did all 3 meals on his own:  cereal for breakfast, leftover grilled chicken/red potatoes/green beans for lunch, and a sandwich and turkey rice soup for dinner.
He was looking forward to having many visitors tonight - fire co. friends Kenny, Kevin, and Chris, and his work colleague Frank.  It was a full family room!  And the timing was perfect because I had a Board Meeting in Phoenixville and Hon was home by himself.  The guys not only came to visit, they also brought soft pretzels for a night snack.  It was so thoughtful that they even took the time to check with me ahead of time.  The original plan was they wanted to bring a Wendy's Frosty.  I looked that up on Google...a Wendy's Frosty was 320 calories and gave warnings about high saturated fats and highly processed.   And it is such an innocent looking Frosty with that cute little girl's photo on the cup!!   So I opt for the guys to bring something more in line with Hons' diet.  Pretzels would be ok.  When I got home, I had 5 guys sitting in my family room munching on soft pretzels with mustard.  They teased me that they had just let the dancing girls co early!  It was fun to watch the guys talk about everything from firehouse, work, township, fair and everything in between.  Smokey was not sure what to do with all these guys.  Usually he's used to the ladies stopping by - Nurse Victoria, PT Lorraine, Noontime Cheryl and neighbor friend Cheryl.   So he just kept roaming around and watching their faces.  He finally made friends with Chris and even did his "hide under the small rug" routine fr all the guys.   Tomorrow Hon has an eye doctor appointment in Phoenixville.  I have another Board meeting.  So he will be doing his tube feed, meals and meds by himself.   
Day 151:  Sunday, April 2
The post-procedure fatigue and anesthesia reaction finally hit him on Friday.  He looked tired and pale.  At least he kept activity to a minimum.  Since the weather was so lousy - cold, raw and rainy - he had the good sense to stay inside where he and Smokey just hung out and relaxed.

Teasing professional party mingler - Sadie

Saturday was a little better - still looked pale but a little more energy.  But his shakiness is back.  He got the opportunity to get out for "a little bit" to visit with many of our fair friends at a fair zone banquet.  Everyone was so happy - and relieved - to see him.  He was like a celebrity - every time I looked, he was surrounded by dear fair friends. 
He even hammed it up with the professional party mingler "Sadie" - it was good to hear him joking and teasing again. 

Visiting with Wisconsin Fair Friend Jen Puente

While he was limited on what he could eat, the host went out of their way to make his meal enjoyable such as getting him low fat salad dressing instead of the evening's menu of hot bacon dressing.  He wasn't able to partake in the wonderful spread of hors d'oeuvres or dessert, so he felt justified in eating more dinner.  He was good about piling on the carrots and corn and lettuce and then showed true discipline by limiting the chicken pot pie and potato filling to small scoops.  Our musical fair friend Galla was so kind in assisting him with passing the bowls of food since she could see his shakiness was making that difficult.  When the platter of sausage and brisket came around, he looked at me with pleading eyes and held up his index finger and thumb to make the hand motion of "a little bit".  I'm such a softie.  He's not supposed to have pork or beef products because of the high fat content, but tonight I just couldn't deny him "a little bit".  So he got about a bite-size of pork and 2 bite-size pieces of brisket.  He was so happy!

In this together!

This morning he had a little jolt - literally.  Smokey, in his enthusiasm to get Hon up, stood up on his hind legs and knocked a candle stand holding a glass globe down off a shelf above the bed - right onto to Hon's head.  So my day started with hearing the Lord's name being taken in vain, and Smokey high-tailing it off the bed and down the hall.  Good thing he didn't get cut because with his thin blood situation, we would have had a mess!  I think we're going to have to issue Hon a hard hat at night!  He went to breakfast and was treated to eat with friends Sandy and Rob.  Sandy was helpful in explaining that his hair loss is due to lack of nutrients and the wine-colored spots on his hands and arms are actually bruises as a result of being on the blood thinner.  All it takes is for him to brush up against something and he'll get another bruise.  So it's going to take some time for that to work itself out.  So I will need to advise his Vascular doctor who wants him to start the aspirin regimen.  GI Dr. C was ok with it, said the benefits outweigh the risk.  But being on the baby aspirin will probably continue the bruising situation.
He had no adverse reactions to any of the foods he ate last night, so that built his eating confidence.  Hon was very excited tonight to dine on a turkey dinner that our forever friend Diane bought us on Saturday night at a popular church turkey dinner that we normally attend  This year going to the April dinner just didn't work out.  So Diane made sure the dinner came to us.  He so enjoyed his turkey rice soup and the turkey/potato filling/cranberry dinner.  For dessert he got to enjoy the pumpkin pie pudding his sister Joanna made.  Lunch was a big zero.  By the time I remembered, it was 3 pm - so we decided to just do dinner.  So we don't earn all our meal points today.   But we sure gained some more points to recovery this weekend.



Day 148:  Thursday, March 30
Everything went like clockwork at Penn this morning.  We arrived at 7:50 am, were called back to Pre-Op at 8:01, Hon went into the OR at 9:15 (same room as last time - lucky room 77), procedure started at 9:25 and he was in Recovery by 10:54.  Our recovery room didn't have a large window, but Hon did get gingerale and graham crackers this time.  He said it was almost like getting an upgrade to business class on the airplane!

The doctor said that his plan for today was to remove both of the stents that Jefferson placed in Hon's liver bile duct.  But when he went in, he had difficulty getting into the duct which means it's still not fully open.  So he was only able to remove one stent and replaced the other with a new one.  He did some scraping of the tissue in the duct and sent it out for biopsy just to rule out that there's nothing else going on.  The next steps are to have a CT scan done on May 12 and a follow up doctor visit on May 31.
The doctor is reluctant to remove Hon's G-J tube yet because his nutrition absorption is still poor according to the blood work.  As the doctor put it, "shockingly bad!".  So we may need to start him on some supplemental vitamins.  In the meantime, that means 6 more weeks of tube feed.  Now I know how the groundhog feels when he sees his shadow!!
The hair loss is most likely caused by the severe lack of nutrition over the past 4 months.  It's just the body's way of letting us know that it suffered a lot during that time of no eating.  The recovery nurse recommended Biotin which is an OTC vitamin supplement for healthy hair and nails.  The wine-colored spots on his hands and arms are due to the blood thinner he was on.  They should go away eventually.
Recovery went much better this time.  No extreme shivering and no need to bring in the warming machine this time.  The first thing Hon asked when he was fully awake from the anesthesia was "where are you taking me for lunch?".  Since he was strong enough to walk out of recovery on his own, I talked him into walking to the wonderful hospital cafe where he made himself a salad with grilled chicken from their salad bar.  He still looked pale from the procedure, but he ate every bit of that salad.  I was amazed with how quickly he bounced back this time.   We decided that our goal is that when we go back on May 31 for the doctor appointment, we're going to walk down the street to the area where all the food trucks congregate and eat our lunch there.  It'll probably take us 15 minutes to walk there.  But Hon mentions how good it smells every time we drive past the food truck area, so we're going to celebrate his progress and do some fun eating.

Speaking of food, we asked the doctor if Hon could start introducing some other foods back into his diet.  We got clearance to start small amounts of egg and cheese.  Hon's smile was priceless.  Of course tonight he asked if he could have a cheesesteak.  I told him let's not push it!
We got home by 3:30 and spent the rest of the day resting.  Hon ate a good snack of pretzels and red grapes, and then had a good dinner of crabcake, baked potato and asparagus left over from Sunday night.  For dessert he even had some raspberry sorbet.
As we were eating lunch today, I noticed frames on some of the cafe tables.  The frames held various inspirational messages.  Ours said, "The road to recovery is not speedy.  But quitting won't make it happen any faster."  Above the quote were 2 lines.  One line was straight and went upward on an incline.  It was titled "Expectations".  The other line was the same but was entangled by a squiggly line that went up and down and around it.  It was labeled "Reality".  So true.   While we expected that Hon would get treatment and make steady progress to a quick recovery, the reality has been filled with ups and downs and moving forward and back.  But our admiration for the new Dr. C and the treatment at Penn has given us renewed hope that recovery is getting closer, and that the path is getting straighter and now headed in the right direction.
Thank you to everyone who texted and emailed their good wishes for Hon's procedure today.  Those encouraging words help more than you'll ever know.

Day 147:  Wednesday, March 29
Big day for Hon.  After we wrapped him in his "Saran Wrap" - aka transparent wound film, he got his shower.  We replaced all his bandages around the G-J tube.  We always had problems with the J tube (intestines) weeping or getting chafed.  Now the G tube (stomach) is acting up, bleeding.  So we had to fuss with that.
Then he had the trip down to the southern end of Chester County to go pick up the Herr's snack bags that were donated for our fair conference.  First "long" drive he's done on his own - longer than I was comfortable with, but he was confident he'd be ok.  He called me 3/4 of the way there because he thought he missed the exit.  But he was right on track and got the snacks with no problem.  Then he came home and finished packing the truck with the rest of the conference items we've been staging in our family room.  A little more lifting than I was comfortable with, but he said he had no pain and no discomfort.
When I got home from work (late, as usual) he had eaten his dinner and was waiting to go to the conference hotel to drop everything off.  When we got there, he helped unload the truck (the lighter items only) and then actively helped fair friends Kevin and Shirley to stuff the conference bags.  He just had so much energy!   My butt was dragging and he was the Energizer Bunny.  We made him the end of the stuffing assembly line - he had to put in 2 items for each bag and then carry the filled bags over to the storage point.  So he was getting a good workout.  And he didn't eat any of the snacks!
His procedure tomorrow is definitely 9 am, and we have to be there at 8 am.  We're scheduled to leave here at 6 am.  Not sure what traffic will be like.  We have our list of questions ready for Dr. C:  1)  when can Hon start to eat more of a variety of food?  2)  when does the "clock" start for the countdown to getting the G-J tubes out?  3)  why is Hon losing his hair? (our newest dilemma) and 4)  what are those wine-colored spots on his arms and hands?
We have to get up at 5 am.  Usually 5 o'clock only comes once a day for me, and it's NOT in the morning!!   It won't take long to fall asleep.  I know I had a busy day trying to get done at work in order to be off on Thursday.  And I'm sure it didn't take Hon long to fall asleep either.  He really had a lot of activity, but he did really well.  He was so excited to go to bed tonight because he's not allowed to have the tube feed hooked up (no food/drink after midnight).  So it's a "free night" with no tether and no being propped up in bed.  He's loving life tonight.
So Lord,  here we are again, asking for safe travel, wisdom for the nurses and doctors, and to build a fence of protection around Hon to keep him safe during the procedure.   We know that You have gone before us and will be with us.  Thank you for all the blessings you have given us through this difficult journey and we ask that you continue to grant us with continued recovery and grace to handle the situations that may not go as we plan.  And thank you for all of the friends and family you send our way just when we need them.
Now Smokey and I are going to bed - it's going to be another long day tomorrow.

Day 146:  Tuesday, March 28
Sorry blog fans - I can just envision some of you still in your jammies, huddled over that morning cup of coffee muttering, "Why hasn't she posted anything for 2 days?"  No, we haven't escaped to some warm tropical island, although that would be a lovely thought.  Things have just been very busy, so here is what's been happening at our mini manor care.
Sunday almost felt like a normal Sunday again.  Hon got himself up and drove to meet his brother for breakfast.  He only had oatmeal, but it was a big step in getting back to the regular routine.  I didn't quite know what to do that morning - no feed tube to monitor (not that I could - we are almost out of tube feed!), no changing bandages, no meds.  I've become so accustomed to hovering that I am lost without my target!  I tell Hon he has to eat good today because we don't have enough tube feed to hook him up during the day.  Longtime friend Diane agreed to come have dinner with us, so a full seafood buffet was planned with shrimp, scallops, flounder and crabcakes.  Felt like old times with me and Hon tag teaming in the kitchen.  Chef Hon and his sous chef.  Smokey is the maitre d' - roaming around making sure everything is under control.  We managed to get all the seafood broiled, plus create a salad, steam asparagus and cook the rice medley with quinoa.  This last menu item was quite the discussion topic between Diane and Hon.  After numerous attempts to get them to pronounce it correctly (keen' wah) and explaining its nutritional benefits (high in fiber, magnesium, B-vitamins, iron, potassium, calcium, phosphorus, vitamin E and various beneficial antioxidants), my lesson in nutrition education just became a source of constant teasing throughout the rest of the evening and multiple pronunciations of quinoa.  Hon finally decided that he's just going to call it "mee-wah".  I couldn't fuss too much - I needed them both to help me finish labeling the water bottles.  Luckily the seafood buffet paid off and we got all 160 bottles labeled and packed.
By Monday we have no more tube feed, so I tell Hon to eat up and I add calling the medical supply company to my To Do list.  I call and they assure me that a delivery is coming.  So is Christmas.  I put Hon on alert to look for some boxes.  He wants to know what else he can do today.  We were waiting on word to go pick up some more items for the fair conference, and since I have a funeral to attend in Delaware County, Hon volunteers to go fetch the items.  Once I get the word that the delivery is ready in Collegeville, I text him and he wastes no time in getting on the road.  It was a little farther drive than he's used to, but he took his time and had no troubles.  He does very good telling the people that he's not allowed to lift anything, so they load the boxes for him.
Hon continues to gain about a 1/2 lb a day.  Monday's food fest included a large bowl of cereal for breakfast and a turkey/lettuce/tomato sandwich for lunch.  Leftover chicken taco was on the dinner menu.  It is such a relief to watch him eat real food, and although he's really wishing we had a larger selection of menu items, he has been keeping to the low fat/no cheese/no meat diet!  And I've noticed he's being very diligent in filling his tube IV bag and managing the tube feed on his own.  Next we have a wardrobe planning session for Hon's outing to the Saturday fair conference dinner.  None of his dress slacks fit, and it's hard to find a shirt that will hide his tube feed apparatus.  I find some brand-new lightweight sweaters in the closet, but we can't find any pants that fit.  So he's going to have to go clothes shopping on Tuesday.  We are both in bed by 10:30 pm - it was a busy day for both of us..
Today I am up and doing the morning routine, and Hon wants to know his assignments for today.  Nurse Victoria is due around 1 pm and he has to go clothes shopping, so he can't travel too far today.  We decide that he can drive to the drugstore and renew his Metformin prescription.  And while he's waiting for them to fill it, he can walk around Lowe's for exercise.  I get a text from the drugstore to alert me that a prescription is ready, so I know he made it there, and Noontime Angel Cheryl reports in that the rest of Hon's tube feed supplies arrived today.   So we are back in business.  Nurse Victoria will probably release him from home nursing care next week - all depends how he does with his procedure this Thursday at Penn.  I get the call from Penn this afternoon that most likely Hon's procedure will be at 9 am.  Oh boy.  We were thinking it would be Thursday afternoon like last time.  We figured we'd get to take our time getting down to the city.  Now we're going to have to be on the road by 5:45 am to beat city commuter traffic and get there by 8 am check in.  I think I might as well just get dressed and sleep in the car in my garage - it's my only hope of being ready on time!  Hon texts me at 5 pm asking what we're having for dinner.  What a difference from 2 months ago when I had to beg him to eat.  Now he's worried about what we're having to eat.  It is a cold, raw, rainy day, so I think soup.  A stop at Wegman's on the way home allows me to also pick up grilled lemon chicken, roasted vegetables, green beans with corn, and rotisserie chicken soup.  Between all these items, Hon can make 2 more dinners and a lunch.
Tomorrow morning is shower morning and then fair friend Gary will be driving him down to Nottingham to the Herr's factory to pick up chip snack bags for the fair conference.  This was actually Hon's idea about a year ago, and it has been a big deal for him to follow through to get these items.   We also await the call from Penn tomorrow to confirm his procedure time for Thursday.  Hope that our fuzzy alarm clock - Smokey - is on his A-Game on Thursday morning!!     

Day 143:  Saturday, March 25
Today was KD's PT day - I'm in charge of physical therapy today.  We start out with retail therapy.  That involves walking, pushing, bending and lifting - all at our favorite place - Giant supermarket, of course.  Hon's in charge of the cart and getting the items off the shelves.  Our weekend dinner plan is turkey chili and baked potatoes, and then broiled flounder with rice and asparagus.  But as we do our therapy up and down the aisles, of course our cart fills up with other odds and ends including more items for the fair conference next weekend.  One of those items is bottled water.  We need 5 cases of the 35-count bottles.  It's all I can do to lift them, let alone lift them into a cart.  And Hon certainly can't lift without doing damage to his G-J tubes.  So we recruit the services of Newman, a Giant employee.  Newman is a very helpful and pleasant young man, probably in his early 30's with very thick glasses and slow labored speech.  He has been walking around the supermarket with a cart of soft pretzels with a sign that says "$1.00 to Benefit Our Troops".    Now he's our personal assistant who is eager to help.  He fetches a flatbed cart and loads up the water, takes it to the checkout and follows up to our car to load the water.  We are so grateful and make sure he knows how much he has helped us.  We even buy a soft pretzel which makes him happy.

When we get home we start therapy round #2 - fine motor skills.  We are re-labeling the water bottles for the fair conference. My job is to cut out the labels and Hon's job is to tape them on.  Smokey's job is being a P.I.T.A. - getting into the paper strips, getting into the plastic around the bottled water, getting into the boxes where we are packing the finished bottles.  Typical Smokey style.  We get through the first carton of 35.   Hon did a good job.  Tomorrow we will do some more.  We have until Tuesday night to get them all done.  It'll give Hon something to pass the time on Monday and Tuesday during the day.
Hon asks for a turkey club sandwich for lunch.  Then he asks for a snack around 3 pm.  So we try out fair friend Anita's Pampered Chef Popcorn Maker.  We have some troubles figuring it out and have to resort to the online instructions which still leave us puzzled.  So we improvise the best we can and it turned out delicious.  2 points for us.  Smokey was our sous chef, keeping careful eye on the microwave during the cooking process.  Most cats would have been frightened by the popping noise;  not Smokey - he was very intent on that microwave - probably because he knows that red silicone mat that he loves to chew on is inside.

We had a nice visit with longtime friend Diane who stopped by this afternoon. Then it was time for dinner.  Hon really enjoyed the turkey chili and baked potato dinner.  Even had seconds and some raspberry sorbet for dessert.  He is now 151 pounds.   No complaints about the itchy red spots today;  he claims they are going away.  
Unfortunately we did not receive the shipment of Vivonex tube feed today.  So now we're going to have to ration and only administer it at night.  That means Hon has to ramp up his game with eating real food.  Something tells me the shipment didn't go out as the medical supply company girl indicated.  Probably the darn insurance thing.  Good grief I would have paid out of pocket to make sure we got it on time.  So I will have to call on Monday and find out what happened.  But if they don't ship until Monday, we're going to be completely out.
So Shingles and Vivonex are now share a spot on the worry list.

Day 142:  Friday, March 24
Hon woke up this morning and told me that he is bothered by an itchy upper left arm.  When I look at his arm, he has 3 of 4 wine-colored dots.  He says they itch all night.  They aren't blistered or weeping;  just marks.  And he doesn't have any pain.  Other than that, he feels good.  Especially now that we don't have to do those Lovenox blood thinner shots anymore.
When I get to work, I tell a co-worker who makes a point to ask about Hon every day about the itchy red dots.  She tells me she had the same thing when she had shingles.  Great.  That's just what we need.  And just something new to worry about.  Just when my worry plate was starting to get empty.
Driving home I'm again wondering what to have for dinner.  Normally we go out to eat on Friday night, but dining out is difficult for Hon to make safe choices.  I remember that he really liked that chicken steak hoagie (minus the cheese and mayo) at Tony's and figure I can do that myself.  I hit the Giant supermarket and ask the deli folks to chip the chicken deli meat for our hoagies.  They are very accommodating.  Grab some hoagie rolls and head home.
Of course the first thing I do when I get home is inspect the red dots and grill Hon.  He is annoyed - says he's had those red dots for months, they are going away, and that I worry too much.   Well at least he has no pain, so maybe the possible shingles home diagnosis isn't correct.  But when I come back into the family room, I catch him looking under his sleeve on the other arm.  So there must be more marks than he's letting on.
He really enjoyed his homemade chicken steak hoagie.  He had chicken pot pie for lunch and cereal for breakfast.  His weight has finally broken through the 150 lb mark.  We are making progress.
No Vivonex tube feed shipment arrived today.  Guess the "overnight shipment" must be coming from Australia!!  Hopefully it will come tomorrow because our supply will be done by Sunday night.

Day 141:  Thursday, March 23
This morning I had a epiphany that Hon will be out of tube feed by the end of the day on Friday.  We have so many boxes of supplies that I thought we still had a whole carton of Vivonex.  We don't.  So I call the medical supply company.  The rep takes the order and then starts looking into Hon's account on the computer.  She doesn't understand why I didn't order supplies last month.  Apparently I was supposed to be calling to reorder supplies on the 3rd of every month.  Who knew??  Just one more thing that wasn't explained to us.  I tell her I didn't understand I was supposed to do that;  I thought they would have been tracking when we would be out of supplies and they would have sent automatically.  They don't.  But the rep is able to tell me that Hon was in and out of the hospital over January and February, so they must keep good records.  She now understands that we weren't using the Vivonex at home and therefore our inventory lasted longer than it should have.  So now she has to figure how much to order.  This starts a conversation that was an uncomfortable flashback to algebra class in High School.  Each Vivonex box is 250 cc and we administer it at 75 cc per hour for 24 hours a day, 7 days a week.  So how many boxes do we need for the next 30 days?  I'm silent.  I have trouble balancing my checkbook.  This is way over my head.  All I know is that we only have 10 boxes left which means we won't have anymore after Friday.   Then she explains that we can't order 2x in a month because they can only bill insurance 1x a month.  And since I just reordered new IV bags, this order now puts us off schedule.  And I should give them more notice because the order is going to take 3-5 days to arrive.  Again, we don't have 3-5 days.  So she's going to overnight 1 carton of Vivonex, but she can't order the IV bags until Saturday.  And now because of my apparent incompetence, my re-order day is now the 17th of the month, but she still isn't sure she can ever get me back on schedule.  Lady, Hon has been trying to get me on schedule for 30 years. So don't hold your breath.
I hang up, exhausted.  I think we're getting Vivonex tomorrow, the remainder of the Vivonex order in 3-5 days, and who knows when the IV bags will arrive.  We may have to borrow Smokey's food dish for Hon's tube feed.  So if a truck carrying 1 carton of Vivonex leaves the warehouse and travels 55 miles an hour to our house, and the second truck carrying the remainder of the Vivonex order leaves another warehouse 5 miles away, traveling at 60 miles an hour, but stops for 20 minutes to pick up the order of IV bags, which truck will arrive our house first??
Next I tackled his online prescription account.  He's down to only 3 meds whereas B.P. he was on 8 different meds.  So it felt really good to click the boxes that said "Stop Automatic Refills" for 5 meds.
I wanted to call Jefferson Hospital's billing department to figure out why we're receiving invoices under 2 different account numbers, but I'll save that for tomorrow.  Don't want to do all the fun things in one day.
Hon had an easier day than I did.  He got his friend Kyle to come out and look at our dryer because I've been noticing that I have to keep repeating the dryer cycle because the clothes are still damp.  Turns out that a bird built a large nest in our dryer vent and it was blocking the air flow.  Plus our dryer vent tube wasn't the right kind and it was so dried out that it just disintegrated when they touched it.  It's amazing we never had a fire.  Thank goodness I said something about the damp clothes otherwise we never would have had it looked at.  I now can't do laundry because there is no dryer vent tube.  Oh, darn.
Then Hon had to drive to pick up the new banner for the fair conference.  And he also cleaned the areas on the garage floor where he spilled some diesel fuel additive.  I've got the best smelling garage around!
Our dinner was hot turkey sandwiches again.  I don't think I can wait until April to meet this nutritionist at Penn.  We just want to understand what he can't have, and get some more ideas on what he can have.  Right now we are just staying away from meat, cheese, eggs, peanut butter, oils or nuts.   And finding all the non-fat foods.  I hope finding menu choices isn't as complicated as ordering tube feed!  Searches online tell me he should be eating yogurt every day.  Good luck with that.  The only helpful thing I found was that he should eat red grapes because they are high in anti-oxidants and are very good for him.  We'll have to hit the grocery store again - in between our multiple tube feed supply deliveries!


Day 140:  Wednesday, Mar 22
Hon's chauffeurs, Rick and Nadine, were here bright and early at 6:45 am to take Hon to his vascular doctor appointment today at Jefferosn.  It was interesting to see Smokey's reaction.  As soon as Hon left, Smokey went and laid down in the middle of the family room, with his chin resting on his front paws, and looked forlornly at me.  He looked so sad, almost as if he thought Hon had left again for a long hospital stay.  It's was he associates with times when I'm home but Hon is not.  He laid that way for almost 20  minutes, then went to his safe place - his Kitty Condo - and curled up in that until I left.  And they say animals are dumb.
While the traffic to Philadelphia was no fun, the appointment went really well.  Nadine taped the doctor's comments on her phone so I was able to listen to the entire appointment from the comfort of my office desk thanks to technology.  Dr. Vascular is an absolute gem.  So professional, so thorough, so willing to spend the time talking with Hon and going over the best next steps.   Perhaps the GI department should take lessons.  Even when Hon told him that we were no longer using the GI doctor at Jefferson, Dr. Vascular didn't judge or chastise.  He just acknowledged that we had the right to a second opinion and stayed on the high road and just continued to discuss his main focus - the care plan around the blood clot.  He even said that he trained at Penn and that they are more aggressive while Jefferson's approach is more conservative.  Conservative?  That's being kind.  He explained everything in easy to understand terms.  By the end of the appointment he agreed that Hon doesn't need to take the blood thinner injections any more.  He recommends Hon goes back to a baby aspirin a day, but wants to double-check with Dr. C first to make sure that isn't going to aggravate the pancreatitis.  He doesn't need to see Hon until Jun 28.  So goodbye Lovenox...best wishes.  We appreciate all you did for Hon, but we won't miss the injections in the morning and we sure won't miss paying the $200 per prescription refill.
Because Hon was up and out so early, it got him off his eating schedule.  So lunch was a bowl of cereal.  Then for dinner we had pasta and salad.  Hon ate everything on his plate.  He did some errands to the post office and walked up and down the driveway.
I was so amazed today at the number of cards and phone calls we are still receiving with folks checking in on Hon.  I don't think he truly comprehends the depth and breadth of care and prayer that surround him every day.  We received a nice card from Hon's sister Connie in Australia and heard from friends from a local parish, and had colleagues at both his and my workplace asking how he was doing.   We are truly blessed to have such a protective wall of help and support around us.  And so I had to smile when I read  today's Devotional topic in my email from Joel Osteen Ministries...so timely:
"For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his sacred tent and set me high upon a rock."  (Psalm 27:5, NIV)

"Hidden in Him

What an amazing promise we have that when we seek God and serve Him with our whole hearts, He will hide us in His shelter. That means you can be so connected to God that you are invisible to the enemy! You are hidden in Him! No matter what is happening around you, you can have strength, confidence and rest. Challenges may come your way, but you won’t be worried about them. You know that, ultimately, things are going to work out for your good. You know that no weapon formed against you shall prosper."Dr. Vascular said it best in the appointment - "You are gaining some weight, eating better and your vital signs are perfect.  You are definitely now in recovery.  And soon you will close this chapter."  Yes, we look forward to closing the book on pancreatitis very soon!

Day 139:  Tuesday, Mar 21
Hon is going to have a project this weekend.  We will be labeling 160 water bottles for the fair conference.  It'll give him something to do to pass the time during the day, plus it'll be good fine motor skills therapy.   We've already got our outing planned for this weekend to go buy the water bottles.  He's also going to go pick up 160 snack bags at the Herr's branch location down in Nottingham.  He's already made arrangements with friend Gary to drive him down.   I can tell that his spirits are picking up and he's looking forward to doing things. 
He is so close to breaking the 150 lb mark.  I can see that he's trying harder to eat more.  His face doesn't look as sunken in and his skinny bird legs don't look so frail.  He had a big bowl of cerel for breakfast and tried his Chicken/Apple/Cranberry Lean Cuisine dinner.  Not a real big winner with him.  He said it didn't have much chicken.  I had an afternoon meeting at work and they offered dinner afterwards.  The selection was chicken tacos.  I thought, "I can do that!"  So off to the grocery store to gather the items and I made him chicken tacos.  Other than the cheese, he could have all the other ingredients.  And...drum roll, please...he had TWO tacos!  It makes me smile to see him finally getting back his appetite and really enjoying food again.
After dinner we gathered up all his paperwork, insurance cards and procedure papers/test results for his outing on Wednesday morning back to the vascular doctor at Jefferson.  I wrote out my questions - especially for the doctor to look at the lump on his belly that developed from the Lovenox.  We are crossing everything - fingers, toes, legs, arms, eyes...that they tell him he doesn't have to do the Lovenox anymore.  It would be really nice to get rid one step of the morning routine.   His blood test results finally posted to his Jefferson Hospital portal website.  I looked at them tonight.  I'm no doctor (yet!) but a lot of the numbers were really below the normal range.  Especially his albumin and his hemoglobin which were both really low.  That wasn't too encouraging.  So really hoping this vascular doctor has some answers on Wednesday.

Day 138:  Monday, Mar 20 - First Day of Spring
Hon is still grooving in his ability to wear jeans.  He shows everyone - so proud.  He finally broke the 147 lb mark on the scale.  He continues to eat well and has worked up to 3 meals a day.
Today I got to use him for a "honey, do" task.  Needed a banner for the fair conference and the signmaker needed the old banner.  So Hon got to take it over in the afternoon.  Nice outing for him, but not too far from home.  And it makes him feel good to know he's contributing to the numerous projects we have in the queue.
Other than that, not much to report because I had a Fair mtg tonight and didn't get home until after 10 pm.  Hon had already eaten dinner and put himself to bed, successfully filling his tube feed back and getting himself hooked up.
The daffodils are recovering from the snow shock.  We still have daffodils that bloom from bulbs we dug up from my grandmother Hughes' house back in 1988 after she passed away.  Every time those daffodils bloom I think of her.  She was known for being a tough cookie but very self-sufficient and resiliant.  She never let on if anything was weighing her down.  She and Hon were always good buddies.   She could be a tough cookie sometimes, but somehow Hon always made her laugh.  He didn't take her raised eyebrow too seriously and she knew it.  But last week when it snowed, my daffodils really got buried and weighed down by the 7" of icy snow  I actually shoveled around them and brushed them off to try and resurrect them.  They looked pretty sad though.  But by the next day, they were standing strong, lifting their yellow trumpets back to the sky.  I think it's Mom-mom's way of letting me she is watching over us.  She's letting me know to keep on, stay strong and don't forget to look up!

Day 137:  Sunday, Mar 19
Today was an exciting day for Hon.  He finally fit back into his blue jeans.  Well, almost.  Hon hasn't been able to wear his jeans since he got sick in November because his belly was so distended - nothing fit.  That's when we had to switch to lounge pants and oversized Tshirts.  But today he tried on his jeans and was able to button them.  Only problem - now they are too big!  He tried several belts, but still had droopy drawers.  I told him he'd fit right in with those silly young men who run around with their pants down around their hips.  He said he thinks he needs suspenders.
We got to go out to breakfast today with neighbor friends Barb and Gary.  Hon was very pleased to show them that he could finally wear jeans.  Today he chose a pancake with side order of strawberries  Everything went well except every time he stood up, his jeans threatened to fall right down!  Poor guy had to walk holding on to the tops of his jeans.
We stopped at the gas station so I could fuel up for the week, and Hon could get his newspaper.  He was happy to run into 3 colleagues from his work and get to talk to them.
When we got home, I remembered I had a bag of some of Hon's old jeans that we were going to take to GreenDrop because they were too small.  Today was Hon's lucky day because they were the perfect size for the size he is now.  He was in a great mood the rest of the day.  Who knew something as simple as fitting into real clothes would been him such joy!
I was still huddled over my laptop finishing up a project;  Hon reading his paper and watching the NASCAR race; and Smokey was being a royal pain in the a==.  It felt like a normal Sunday.
Our homecooked seafood dinner turned out great.  Hon ate 3 broiled scallops and 4 broiled shrimp plus left over red potatoes and green beans from Friday's Wegman's shopping.   Then we wrapped him in his "saran wrap" so he could take a shower.  He was well-fed, clean and feeling good.  It was a good weekend.
 
Day 136:  Saturday, Mar 18
Hon had an excellent day today.  He was up early, drove to go get his newspaper, and ate a bowl of cereal for breakfast.  I was hunkered down with my laptop working on a project.   The weather was really miserable, so we didn't mind just hanging out at home.  We did eventually venture out to the mall to get an item to donate to the auction for the upcoming fair conference.  We had brainstormed ideas Friday night, and Hon found sale prices in his newspaper.  I know he's feeling better because his patience level in the department store was back to normal - very little of it.  But we finally agreed on the item and were out the door before his window of attention space closed completely.  He wanted to carry the bags - I'll take it.  I like this kind of physical therapy!  Walk around the warm mall and someone carries my bags!
Hon specifically requested turkey meatball sandwiches for dinner.  So we stopped at Giant and purchased the ground turkey and rolls.  Then Hon wanted to go look at the Lean Cuisine frozen meals again and he picked out 3 that were safe and he liked.   Then he thought we should have scallops and shrimp for Sunday dinner, so we went round again and picked those up.  Our cart looked full, and all we originally went for was ground turkey and rolls.
We baked our meatballs so as to avoid frying them.  Hon did the mixing;  I did the rolling.  They turned out delicious, and Hon ate an entire hoagie roll size sandwich with about 5 meatballs!  So great to see him with his appetite back.

Day 135:  Friday, Mar 17 - St. Patrick's Day
Another big outing was planned for today.  Hon's brother and great-niece took Hon out to breakfast.  We discussed the eating plan earlier in the week so that Hon could start thinking about the best food choices.  Of course B.P. (before pancreatitis) it would have been a Western omelette with potatoes and a side of sausage.  Now most breakfast foods are off limits.  No whole eggs, no fried anything and no pork products.  Really limits a guy's options.  And Hon loves breakfast.
Nurse Victoria came first thing in the morning and then the 3 Musketeers were off to Anna Marie's in Royersford for their breakfast venture.  Hon went with the oatmeal and a few potatoes.  This place is known for large portions, and usually he would have split the omelette meal with his brother; so today he brought home half of the bowl of oatmeal and the potatoes.

Hon with brother Gerrit and great-niece Courtney

I have a lot of Angels who keep tabs on Hon throughout the day and send me messages of what's going on.  I feel like the C.I.A. and hope that President Trump doesn't accuse me of having Smokey wear a wire to track what Hon's up to.  My mom reports in that Hon was sighted at the Wawa (probably getting his newspaper) and Noon time Cheryl reports in that Hon was doing well after his morning outing and now was back home having a visit with his oldest brother George.  Angels Mary Lou and Russ offer to buy stuff for us at Shady Maple, and Angel Bonnie was willing to buy protein shakes for Hon (if I could just get him to try them!!)
But what I really needed today was a Dietician Angel.  My job after work was to figure out what to have for dinner.  My plan was to stop at Wegman's because they have a soup bar, a salad bar, an Asian food bar and a quick meal section.  Surely between all those options, I would find something.  But I actually cried in the grocery store tonight.  It became very overwhelming to try and find food options that he could have and would provide a variety for him.  The soup bar options were cream of something or had beef/pork products.  The only safe option was rotisserie chicken noodle, and since he just had chicken noodle pot pie, that seemed boring.  I got it anyway just so my cart didn't look empty.  I walked past the hot food bar - mozzarella sticks - no;  chicken wings (Hon's favorite B.P.) - no;.  Macaroni and cheese - no;  Meatballs - no;  I even checked out the Vegan section but again a lot of options had cheese.  Guess their idea of Vegan doesn't go to the extreme of no animal products.  The Asian section had better ingredients - chicken, rice, vegetables - but a lot of the stuff was fried.  Finally over to the quick meal section, and after what seemed like an eternity, decided on chicken marsala, red potatoes and green beans.  But now I'm so weary of thinking that trying to figure out what I'm having to eat is too exhausting.  I settle on salad bar and some fish fry.
Hon is excited about his Friday dinner, so that makes all the effort worthwhile.  He heats everything up and prepares his plate.  It does look really healthy.  And he has enough potatoes and green beans left over for another meal.  Once I figure out what protein he'll have.  We've eaten so much chicken and turkey, we're going to start to sprout feathers.  He suggested turkey meatball sandwiches for Saturday night, so we'll go with that, minus the cheese.  We really need to find a nutritionist to help us.  We've been sticking to the diet plan that the Jefferson dietician gave us back in January...but I'm not sure how long we need to keep doing the low fat, no whole eggs, no cheese plan.  Never realized how many food choices use egg and cheese until I had to plan a menu without them!!  Guess we'll be trolling the frozen food aisle again this weekend to get some more ideas from Lean Cuisine!

Day 134:  Thursday, Mar 16
Look out world...Hon's on the loose!
Hon's last PT session was yesterday, so he was ready and eager to strike out on his own. Today's outing included a visit to Quest Diagnostics for blood work.  He has his follow up appointment with the vascular doctor on Wednesday, and needed a complete panel of tests done prior to that visit.  Because I had a service club meeting tonight, and the fact that Hon stinks from the weeping J tube site, I decided he needed his shower this morning.  Not that we need an extra step in our morning routine, but it only seemed fair to the other people at Quest that he smell clean.  So we wrapped him in his "saran wrap" transparent film and he did his shower.  We actually got all that plus the normal vitals, finger stick and blood thinner injection done in good time.  By the time I got home tonight, Hon was already in bed.  He had eaten dinner, got "Fred" all hooked up, and was sound asleep.  Will have to wait until Friday morning to find out about his day.

Day 133:  Wednesday, Mar 15
Today was a happy day and a sad day.  The first happy part was that Hon was discharged from his home therapy by PT Lorraine.  She determined that he had reached the goals and no longer needed her services.  He knows all the exercises and can continue on his own.  We are considering sending him to outpatient PT because honestly it's really hard to get yourself motivated to exercise at home when you don't have anyone to come along side you to encourage and hold you accountable.  The sad part was that Smokey had to say goodbye to PT Lorraine.  He had struck up a real friendship with her and will certainly miss her visits - especially her thermometer that he so enjoyed stealing out of her bag.

The second happy part was that Hon's sister made him homemade chicken pot pie.  As soon as I got home from work, he was up and in the kitchen to get it on the stove.  He had a healthy portion for his dinner and ate a whole bowl full by himself.  He really enjoyed it and he has enough left over for more lunch or dinner later this week.  The sad part was .... well, there was no sad part.  It tasted so good.
It was bitterly cold today, made worse by the frigid winds.  Hon cheated on his walking exercises today.  He actually drove his truck up to the mailbox and back.  Not too interested in walking outside today.  

Day 132:  Tuesday, Mar 14 - Snow Storm Stella!
Well the Nor'easter "Stella" wasn't as bad as we were led to believe, at least not in our corner of the world.  While some places did get a lot of snow, we only got about 7 inches.  But what we didn't expect was the ice and sleet which added a whole new dimension to the situation.  I'm still very thankful that we did not have to drive to the City today as roads got pretty slick from what we saw on the news.
Hon was up early watching the news.  I spent an hour trying to decide if I should try driving to work.  Then the sleet and icy stuff started and that pretty much made the decision for me.  We were surprised to get a phone call from Dr. C. who just wanted to check on Hon and make sure he had no more shaking/shivering last night.  Hon kept calling him "sir"...which tells me he already greatly respects Dr. C.  Hon hangs up the phone and says, "Nobody ever called me after the other procedures."
About an hour later we get another call - this time it's a nurse from Dr. C's office following up on Hon.  This was probably standard operating procedure, which tells me that Dr. C. made his check-up call on his own time.  As Hon's sister says, "He's a keeper!"
I spent the day changing Hon's bandages, filling the feed tube and doing "work work" on my work laptop.  I am very content wrapped up in my Berkshire blanket, sitting by the family room windows watching the every-changing precipitation show.  Then Hon gets up and announces that he's going out to shovel the front walk.  "Oh no you're not!" I declare.  I make my case that any kind of shoveling will pull on his G-J tubes, and the fact that he just had surgery yesterday.   "We have to do something before it all freezes, otherwise we're going to have a mess out there...and PT Lorraine is coming tomorrow!"  Guess my nice cozy home-work environment just came to an end.  I layer on the outerwear and head outdoors.  It took me over an hour to do all the shoveling because the snow was so heavy.  Now it feels more like 17" than 7".  But it got done.  There would have been no way that he could have done it.  Normally we also take the snow blower and cut the "moat" around the front of the house to prevent flooding if it rains on top of the frozen snow.  But between the two of us, we we can't do that, so we're hoping for thaw before rain.  And hopefully Hon isn't going to try to make it happen tomorrow when I'm back at work.

Today was a great eating day.  Hon had a waffle for breakfast, rice cake for snack, a Lean Cuisine pot sticker/Asian rice meal for lunch, and hot turkey sandwich and oven fries for dinner.  If we keep having days like this, we'll be closer to getting those darn tubes out.
Thank you for our Angels these past two days...the one who wheeled our trash can up to the roadside... the one who plowed our driveway, twice.  We so appreciate these random acts of kindness.
But I didn't appreciate my PITA Smokey much today!  Like a little kid cooped up in the house and doesn't know what to get into.  Every time I'd sit down, he'd be into something he shouldn't be into, or somewhere he shouldn't be.  There was a lot of "Smokey - NO!" going on in our house today - an always coming from me!  I ask Hon, "Is he like this when I'm not home??"  Hon just grins and shakes his head "no". He's getting a real kick out of watching me and Smokey in the battle of wills.
After all the fretting and reprimanding with Smokey all day long, this is how we end our day...Smokey supervising the blog writing for the night.  I must be forgiven.

  


Day 131:  Monday, Mar 13

The Philadelphia skyline was bright and sunny as we headed east to Hospital of University of Pennsylvania (HUP).  It took us all of 90 minutes to get there with commuter traffic. The friendly valet parking guys were hopping this morning - 4 lanes of 5 cars each at any given time.  I still think Daddy would have been so impressed with their operation.  I wonder if I could get them for Fair parking??
As soon as I walk into HUP, I feel so much more at ease.  Maybe its the architecture with all glass walls, elevators and skylights.  Maybe it's the helpful man who stands inside the lobby wearing the bright red suit jacket and fills the "Walmart greeter" role.  Maybe it's the vast openness of the lobbies.  Maybe it's the smiling and professional doctors, nurses and nursing assistants we pass in the hallways.  Whatever it is, it is a welcomed feeling.  I can honestly say this is the first ERCP that Hon wasn't dreading.
Check-in at the Endoscopy Center goes smoothly.  The waiting room is reserved and quiet.  There are large

electronic status boards on the walls that show each patient, their arrival time, the time they enter pre-op, the time the procedure begins and ends, and their discharge time.  Almost like the airport checking on the arrivals and departures.  And they even have cell phone charging stations.  So cool.  We were to arrive at 11 am and the procedure was to begin at 12 noon.  I quickly learned that really means arrive at 11 am, go back to Pre-Op by 12:00 noon, but then wait another hour to go into the procedure.  So a lot of waiting between 11 am and 2 pm.  HUP lets the family person go back into Pre-Op until the time they go into the procedure.  That was really nice because at the other hospital the family member wasn't allowed back in the procedure area.  The Pre-Op is huge - we are in Exam Room #3 to start and Hon's procedure was in Surgery 77.  My favorite numbers - 3 and 7.  There was 1 nurse who did the vitals, another nurse that started him on his antibiotic IV and still another nurse who wheeled him back to the procedure unit.  Dr Murthy, Anesthesiologist, came in and went over things.  She said no breathing tube would be needed this time, which made Hon very happy.  The most shocking part was that Dr. C. actually came in, SAT DOWN, and talked to us about what he was going to do, his research of Hon's prior procedures and shook Hon's hand.  That went a long way with both of us.  
While Hon was in the OR, I roamed around and checked out the rest of the hospital which is huge.  Found the cafe which was also tremendous, and treated myself to a tuna salad salad and vegetable minestrone soup.  Then went back into the Endoscopy waiting area to watch the Status Board.  My calculations show that each procedure takes an average of 45 minutes.  Of course, after 75 minutes, Hon's status hadn't changed.  Finally at 3:35 he moved into recovery and the Nursing Assistant came to take me back to recovery.

Hon looked good, but he was shivering uncontrollably.  His hands were shaking so badly that he couldn't even turn the pages of his discharge papers.  His body was shaking so hard that he kept setting off the heart monitor.  His recovery nurse kept running to get warm blankets, but after 5 blankets, she was running out of ideas (and probably blankets!).  So she went to hot packs behind his neck, on his chest, under his back.  Still shaking.  Next came warm blankets on top of his head.  He looked like a shepherd!  Then she called in the anesthesiologist because it had been 40 minutes and he was still shaking.  Dr. Murthy said to call Dr. C because this wasn't normal.  Of course...it's Hon!!
Finally they went to another floor and borrowed the heated blanket system called WarmTouch.

It was basically a paper blanket that looks like a puffer jacket. It hooks up to a vacuum hose attached to a machine that looked like a ShopVac.  The machine generates heated air that fills up the blanket and makes it like a giant heating pad.  It was really cool (no pun intended) and I seriously was trying to think how we could pack it in Hon's hospital-bag and bring it home!  Can you imagine having that on your bed on a cold winter night?  They would just have to modify it - machine definitely needs a muffler!
After 10 minutes of being buried under all the blankets, he finally stopped shaking.  Dr. C came in and was very concerned.  He ordered fluids IV because Hon might be dehydrated.  Hon looked up at me with sad eyes because we've been down this path before - IV usually means overnight stay.  "I don't want to stay!" Hon said softy.  I stare at the vitals monitor, trying to will it to start showing some good numbers.  Come on!  Just let him really be an outpatient for once!!  His heart rate was over 110, the BP was high, and his oxygen saturation level was down to 93.  The nurse was now calling in other nurses to look at him.  They were huddled over their computer monitor trying to figure out what to do.  He's never had this reaction before.  He was just on the edge of having to stay overnight.  But finally the HR came down as did the blood pressure.  Dr C came back and felt that Hon could go home, but we have to call him tomorrow and let him know how he's doing.  We also need to call to schedule another ERCP in 2-4 weeks.  Hon was adamant that he wants it done as soon as possible.  So we need to figure out if he's going to have it done before the Fair Conference or after. I don't want this procedure to take away his outing to the conference dinner.  We will call the Scheduler tomorrow, assuming she's able to make it into work with the mega snowstorm that is predicted for tonight.
For the beginning of the ride home, Hon just kept saying how different this procedure experience was - in a good way.  He was so impressed that Dr. C talked to him in Pre-Op (and that he actually sat down in the visitor chair!) and talked to him in the OR before it was lights out.  And that he came twice to see him in Recovery.  And there was never a lack of nursing care throughout the day.  He is so happy with this new plan. It pains my heart to think of all the wasted time at Jefferson going in circles.  But we can't dwell on that - just go to move forward and be thankful we've been given HUP.
We did ask Dr. C about Hon's blood thinner injection site lump.  Not one bit concerned.  Happens all the time.  We asked who we call if Hon starts to crash and burn.  Any problems, go to the ER (guess we get to pick which one).  And we asked about getting a script so that Hon can go to outpatient therapy.  He said he would absolutely sign it.  I also asked when the G-J tubes would come out.  It's all in Hon's hands right now.  As soon as he starts eating regular size meals 3 X a day, then they will take them out 4 weeks after he's proven that he can do it.  It's all up to him now.
We get home by 7:30 pm, very tired.  Hon falls asleep around 9 pm, and I'm not far behind.  It think it's going to be an early night for both.  And as Hon's niece said, we are praying for an UNremarkable recovery time tonight.  Don't need to be driving to Phila to an ER tonight with the pending mega snow storm.
As I reflect back on today, I'm reminded of those lonely nights in Jefferson ICU in the beginning of this journey.  I used to stare out at the dark Philly skyline, repeating that phrase - "Sometimes in the dark...never at a distance."  I used to look at the statue of William Penn, all lit up at night, and secretly ask him to ask God to guide us since he was closer to heaven than I was.  How ironic that we are now at "Penn".  Guess Billy and God talked after all.
.
Day 130:  Sunday, Mar 12
Nurse Victoria was here.  She decided she better come today before Winter Storm Stella descends upon us on Monday night and Tuesday.  She does the normal vitals and changes the bandages.  We notice that Hon's J tube is really weeping again.  She also says we should ask the doctor tomorrow about the lump from the Lovenox injections.   According to her, and Hon, PT Lorraine will probably be releasing Hon from care this week.  She wants us to get a script so that he can go to outpatient therapy.  But Nurse Victoria reminds us, once he goes "outpatient" with PT, then he can no longer get nursing care.  So it sounds like we will soon be saying farewell to Victoria and Lorraine.
We go on an outing to see my mom and brother Kenny today.  Hon and brother Kenny amuse each other and watch NASCAR on the flatscreen TV.  Hon is quite happy to watch TV there because their TV doesn't have lines on it and a screen the size your average computer!
Hon gets "saran wrapped" with the transparent film so he can take a shower.  Now the J tube is bleeding.  Wonderful.  Not sure why, but it seems like the gravity is pulling the tube away from his stomach and causing the bleeding. We try to patch him up and tape the tube to his stomach to try and relieve the weight of it pulling down.
Dinner was roasted chicken, mashed potatoes and asparagus.  He stays up until 10 pm, then takes the last glass of water he's allowed to have.  Tomorrow we head back down to Philadelphia, only this time to Univ of Penn, for the next ERCP.   New doctor, new hospital, new procedures.  Thankfully our appointment is 12 noon, so if Hon behaves himself, we should be out of Philadelphia and back home before Winter Storm Stella comes to visit.
And so say another silent prayer that we have safe travels and that all the details work out for tomorrow's procedure.  Wednesday would mark 30 days since Hon has been hospitalized.  I'd like to meet that milestone.

Day 129:  Saturday, Mar 11
The problem with burning the midnight oil working on a project and going to bed at 3 am is that you don't want to get up the next morning.  So thankful today was Saturday and I could sleep in until 9 am.  When I woke up, I found that Hon was already up and out sitting in his recliner to watch the morning TV news with Smokey.  In fact he even fed Smokey - something he hasn't done in 4 months.  He's already dressed and sneakers on because he thinks we're going on our Saturday Errands Adventure this morning.  But I'm not charming enough yet to face the public, so I decide I need to hang at home and do indoor cleaning. 
As I'm puttzing around dusting, vacuuming and straightening, Hon tells me he has a "proposition" for me.  Apparently that mind of his has been working overtime since our conversation last night about the upcoming fair conference.  We pretty much had resigned ourselves that Hon couldn't go because it involves an overnight hotel stay and we'd have to take his tube feed, "Fred" and all the other paraphernalia like his syringes, protein supplement, enzymes and other pills, etc.  Too complicated and too uncomfortable for Hon.  But I had hoped that I could at least take him to the Saturday dinner at the Oley fairgrounds which is only about 30 minutes from our house.  So Hon's proposition is that I would go to the conference, but he'd get his brother to bring him to the Saturday dinner to save me from running home.  We check in with fair friend Kevin on the menu to make sure Hon's going to be able to eat something.  The answer?  Sausage (NO); Brisket (maybe if it's a lean cut); chicken pot pie (Questionable - this is Hon's absolute favorite, but it depends on amount of butter/egg); Lettuce with bacon dressing (well, the lettuce part is ok); Filling (again - depends on amount of butter and egg ingredients); Corn (OK);  Glazed Carrots (OK); Apple Butter (probably not); Cottage cheese (Hon was never a fan, even B.P. - before pancreatitis), Chow Chow (probably ok since it's a pickled relish made from a combination of vegetables); and Ice Cream with all the toppings (NO).  Hon and I look at each other and laugh.  "Well," he says, "I guess the vegetables will be ok!!"  But this is the first time he's showing signs of actually wanting to go out and attend a function, which is encouraging.  And knowing that he really can't overeat because his stomach just won't allow it, he probably will just have a tasting of the things that are safe to eat.  He knows that throwing caution to the wind (like the chili episode on Thursday) may feel great at the moment, but only hurts him in the end.  So we're keeping fingers crossed that all goes well on Monday with the procedure and that we can fulfill his wishes.  He needs to see his fair friends. 
Long-time family friends Kim and Joanne (aka Mrs. Z) stop by in the afternoon to visit.  Kim and I have a meeting and she was kind enough to come to me so I could stay home with Hon, and Hon and Mrs. Z have a nice visit talking about everything.  I'm engaged in one part of the house with the Kim meeting, but with one ear listening to Hon chattering away in the other room.  Having visitors really lifts his spirits.  B.P. he would always run into friends and aquaintances wherever we went and enjoyed talking with them.  I was forever saying, "Who was that?"  So this sitting at home all day with limited people contact is hard for him.  I am very thankful for those who have taken the time to stop and see him.  It's making a big difference.  
After the visit we head out to do our Saturday Errand Adventures.  It's very cold and windy today.  Brrr chilly.  But he doesn't seem to be deterred.  We hit the Pet Store to stock Smokey's food cabinet, and then head to Giant.  I made Hon write the list (his handwriting has suffered from the lack of muscle tone in his hands and arms, so he needs to practice writing) while I was puttzing around cleaning.  So he is the man in charge at the grocery store.  But I end up getting most of the items because we had to stop 3 times when he ran into people he knew and he had to tell them the story because they are concerned that he looks so drawn and weak.  When he gets done being a Grocery Store Social Butterfly, he tells me he's wishing for Shepherd's Pie which sounds pretty safe.  We also check out the Lean Cuisine frozen meal selections to see if there's any ideas we could make on our own.  But a lot of them include cheese - lasagna, manicotti, etc.  So we again are left frustrated.  We do buy a Pot Sticker Asian meal just to see how he likes the frozen meal thing.  Hon loads all the bags into the car, walks the cart back to the store and we head to the Wawa to get his newspaper.  When we get home he unloads the car.  More therapy lifting those grocery bags!  Then it's right to the TV to watch the NASCAR race in Las Vegas while I make the Shepherd's Pie based on his verbal instructions.  It turned out ok; a little dry probably because of the 93% lean ground beef.  Hon went back for seconds, so I guess it wasn't too bad!
We end the evening watching the Philadelphia Flower Show preview on TV.  The theme this year is Holland.  It is a sad reminder that Hon was supposed to be leaving next month for a trip to Holland, but it was another plan we had to give away when it became evident that he wasn't going to be strong enough to go.  It also reminds me of an essay I read called "Welcome to Holland" written by Emiy Perl Kingsley in 1987.  And while her original intent was to describe the experience of raising a child with disabilities, there are definitely parellels to the changes in our life since pancreatitis.  It goes like this (bold accents added by me)...

c1987 by Emily Perl Kingsley. All rights reserved
"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

We now have our own Holland.  Some days there is sadness about losing our plans,  But tonight, as we sit together bundled up on the sofa watching the Flower Show, Holland doesn't feel so bad. 

Day 128:  Friday, Mar 10
The chili from last night's dinner gave Hon some difficulties overnight, as I feared it would.  He went too spicy too fast.  He's too confident that nothing bad will happen.  The chili reminded him that the pancreas is still in charge.  He had to get up several times to drink water, and he had indigestion all night.  I told him that maybe we need to skip on chili for a while.
Today we had about 3 inches of snow, but thankfully it never really got cold enough that the snow stuck to the roads or sidewalks.  Traffic was extremely light for me heading to work.  When I got home I could tell that the truck had been moved.  I asked Hon where he went.  He was very proud that he went up the road to get diesel fuel and to get his paper from the Wawa.   He waited until afternoon to be sure that it wasn't too cold or windy.  I asked him how he did, to which he replied, "Well the truck still has 4 corners!"
Hon had a busy day (besides his little escape from boredom outing).  PT Lorraine came - she upped his weights again ..."She's killing me!", he complains.  Then noontime angel Cheryl and little Anderson arrived

to do the mid-day meds.  Anderson even gave healing hugs before he left!  Poor Smokey....balloons yesterday and now the little person was back today.  He still doesn't know what to make of him.  Finally Hon made some phone calls to track down Herrs' Potato Chips donations for the upcoming Fair Conference that we're supposed to go to on Mar 31.  He's had the idea for over a year and was very pleased that he was able to talk to Herr's today about it.
Univ of Penn called today to notify us that Hon's procedure will be at 12:00 noon on Monday.  We have to be there by 11 am.  We are very happy about this time slot because now we have a fighting chance of getting home before rush hour...and before the impending super snowstorm that all the TV meteorologists are predicting.
We are getting frustrated with the limited foods that Hon can eat.  Really makes planning dinner difficult.  He had a waffle for lunch and made a turkey/lettuce/tomato sandwich for lunch.  I'm wishing for pizza but don't have the heart (or the energy to go back out!) to eat pizza in front of him.  We kick around some ideas and he decides on spaghetti with marinara sauce - no meat, no cheese.  He does well, but doesn't finish the bowl that I gave him.  I, of course, didn't complain that I had to finish his portion.  I never met a spaghetti I didn't like!!
He stayed up until about 9:30 pm and then we grabbed IV Pole "Fred" and took them both to bed.  As we're all walking down the hall (well, "Fred" got a push), I was talking about the upcoming Fair conference and wondering about a list of gift items that the planning committee is using to solicit those gift bag item donations.
Me:  "I haven't seen the list."
Hon says, "I don't know about the list either.  I've been M.I.A [missing in action].".
Me:  "Oh yeah?  You've been M.I.A.?"
Hon:  "Yep!"
Me:  "Well, then I guess I've been M.I.B. [as in the letter that comes after A]
Hon:  "No, you are V.B."
Me:  "V.B"?
Hon:  Yes, just Very Busy!

Wonder how he gets so clever at this hour of the night!  The fresh air from his little excursion in the truck today must have stirred his brain cells!  
I go back to check on him in a few hours - standard operating procedure these days to drop off his cold bottle of water - and see that Smokey is curled up between Hon's ankles, sound asleep.  He hasn't left Hon's side since I got home.  All daddy's boy tonight!  Guess I'm solo on Friday date night!


Day 127:  Thursday, Mar 9
Home Health Care Nurse Victoria was here bright and early.  She checked out Hon's bruise and lump.  She thinks when I gave the injection that I didn't have the needle inserted deeply enough and the medicine collected under the skin.  Hon is to ask the new GI doctor when we go for the endoscopy on Monday.  Not sure how much time Hon will have to talk to anyone before the surgery, but I'd also like to add to the list that his J tube site is weeping again.  We're back to changing bandages twice a day.
Several other Hon-Care tasks today.
We ran out of Blood Thinner syringes yesterday, so contacted the Vascular Doctor aka Vein Clot Doc to renew that prescription.  It was quickly called into Rite Aid.  Good service from the Vein Clot Doc!!
Also needed to renew his tummy protector pills.  Another call to Rite Aid.
Confirmed my brother and sister-in-law can take Hon to the Vein Clot Doc follow-up appointment on Mar 22 down at Methodist Hospital.  Really hoping that Doc releases Hon from his care because I'm growing weary of giving the injections, and Hon's so over the whole thing.

When I get to Rite Aid to pick up the blood thinner and tummy pills, the clerk informs me that the syringes are NOT covered by my insurance, so $200 please for a 30-day supply.  Yikes!  I do some mental computation and realize that Hon's appointment is 12 days away.  So why pay for 30?  Nice Pharmacist takes back 2 boxes and says they'll hold them in case I need them later.  If we need more after the appointment on Monday, I can always go back.

Hon had another busy visiting day:  Nurse Victoria, firefighting friends Lois and Dick who surprised him with Balloons, and brother Gerrit.  Hon was looking festive with his balloons.  But Smokey was a little cautious.  As Hon puts it, "He liked biting the ribbon strings and starting to run away with them until he looked behind him and saw he had a big balloon right on his butt!"
Tonight was a big night....(drum roll, please)...as we introduced ground beef back into Hon's diet.  I was a little worried when Hon decided he wanted chili and baked potato tonight.  And I held my breath while he ate.  But he only had about a 1/3 of a cup and only 1/2 of the baked potato.  And when he went to bed, he was still feeling good.  Whew!  I don't think we'll make a habit out of that meal choice.  Too close for comfort for me with the fat content.

Day 125 and 126:  Tuesday, Mar 7 and Wednesday, Mar 8
My apologies to all of Hon's Blog Fan Club members who were going through withdrawal not having a blog entry to read the past 2 days.  I will admit I fell down on the job - had great intentions each night, but sleep highjacked the intentions.  The one night I actually fell asleep, sitting up, with the laptop on my lap.  I woke up at 2 am, QVC was still selling on TV, Smokey was sound asleep in Hon's chair and I didn't really feel like blogging.   Then I think, "I'll catch up on it in the morning!"  Yeah, right.  Our mornings are busier than our evenings.   So trying to get back on track.  Here's what's been happening at our mini manor care...
Hon still has the bruise and lump under his belly skin.  We are assuming that it's from a bad stick with the Lovenox injection.  Usually I have no troubles.  But for now we're staying away from that side of his belly.
I didn't get to see much of Hon on Tuesday.  The second monthly Board Meeting was Tuesday night and we didn't finish until after 9:30 pm.  By the time I got home he was in bed with his night light on his bed stand.  Like a little kid waiting to be tucked in for the night.  But he wanted to make sure I knew what he had eaten for the day and that his dear friend Mitch had stopped to visit him.  He also had walked up to the road to bring back the trash wheelie container, only to get caught in a rain downpour - with no hood or heavy jacket on.  Guess he got some cardio in because he had to be a little more swift to get back to the house!
Wednesday I decided to drive the truck to work.  I had taken it on Monday, but deferred back to my car on Tuesday because the 2nd Board meeting has tight parking situation and suddenly parking the truck feels like parking a tank.  And honestly, I miss my Sirius radio!  Anway, when I got in the truck to leave I noticed Hon's heavy flannel over-shirt and his sunglasses.  Now I'm a trained detective but it didn't take long to figure out most likely he had been out in his truck on Tuesday.  He didn't say anything, and neither will I.   Sometimes a man just needs to be at one with his truck.
Wednesday afternoon Hon called me at work to tell me he wanted hot turkey sandwich and oven fries for dinner.  This brings a smile to my face because that was always the routine B.P. (before pancreatitis).  He would call me every weekday at 4 pm to discuss menu so that he could stop at the grocery store and buy whatever items we needed.  So my commute home included yet another stop at Giant.  The self-checkout attendant now knows me by name.
Hon got to take another shower Wednesday night.  We did better with the placement of the transparent films over his tube sites.  At least this time he had a dry belly.  By the time he finished with that his hot turkey sandwich and oven fries were ready.  He surprised me by actually having (2) slices of bread.   Having seconds on meals hasn't happened for a long time at our house.
Wednesday visitors included a surprise visit from long-time friend Rich from Ridge Fire Co. and a weekly visit from PT Lorraine.  She upp-ed his weights today, so he was feeling the effects from that.  PT Lorraine was thrilled that we had acquired our own ankle weights, so they got broken in.
The comic moment of the day involved Smokey who apparently is a constant source of amusement and wonder for Hon.  First Smokey has an obsession with tissues.  Well, let me re-phrase... he has an obsession with tissues being in the box.  So he managed to pull all the tissues out of a brand new box by Hon's recliner.  Then he buddied up to PT Lorraine by actually crawling up into her lap while she was watching Hon do his leg exercises.  And then he stole the new microwave mat I just purchased (from QVC, of course) from the kitchen and was walking around the house carrying it in his mouth like a prized catch.  Maybe I should cancel our Cable subscription...sounds like we have all the entertainment we need in a 10 lb grey pussycat.
  
Day 124:  Monday, Mar 6
The bruise/lump on Hon's belly is still there this morning - it hasn't really changed in character, but it's still unsettling.
This morning Hon announced that he was taking my car to the garage for its oil change.  There's little time to dispute or negotiate as I am ready to walk out the door for work.  I do make him promise that he goes directly to the garage and back - no other wandering - and to text me as soon as he gets home.  But I leave the house feeling uneasy.  I know he's got to try, just was hoping it wasn't going to be during the morning commute hours.
Halfway to work Nurse Victoria calls wanting to know if Hon is home - she's waiting at the front door.  Her text message got overlooked on my phone yesterday and she's there for his visit.  I haven't even gotten to work yet and already I'm on Strike Two
I ask her about the bruise/lump.  She said it's probably a result of the Lovenox blood thinner injection.  She's seen other patients that exhibit huge bruises.  I remember Hon had that when they were giving him the heprin shots in the hospital.  Guess he's just been really luck up to this point with the home Lovenox injections.  She thinks the lump is a result of the medication not being fully absorbed by the tissue.  Instructions:  keep an eye on it and call her if it doesn't resolve itself in a couple of days.  She will reschedule with Hon for later this week.
As I continue to work, I hear a message on my car radio about how, with God, nothing is wasted.  He takes even the crappy stuff and uses it for good.  I reflect back on Hon's crappy stuff and it does bring me a sense of peace remembering how God has used the scary and sad situations to strengthen and rebuild other areas in our lives, and to give me the opportunity to share it all through this blog - to show God's power, grace and mercy through this journey.
Noontime Angel Cheryl reports in that when she got there Hon was sound asleep on the sofa - she actually had to wake him up.  Wow...the joy ride must have really worn him out!  He hasn't napped on the sofa for over a week.  
I decide to attend a monthly Board meeting because Hon's been on such a good track lately with eating and being independent.    When I get home around 8:30 pm, he's rather out of sorts.  Back on the sofa, not hooked up to his tube feed.  He doesn't seem to want to chit chat and seems annoyed when I go through my litany of questions - how to you feel?  how was your day?  what did you eat?  I get very little info except that he did have his leftover flounder and asparagus for dinner, and his brother Gerrit didn't come over today because of car troubles.  Other than that, he's pretty non-communicative and seeds of worry start to take root in me.   
When I check on him later that evening, he has all the bed covers thrown off.  My gut tells me he's probably running a fever.  We'll see how things are on Tuesday morning.

Day 123:  Sunday, Mar 5
Hon gained another pound according to the morning weigh-in.  He's up at 6 am (good grief!) because he can't sleep.  We do our morning routine and then head out for today's outing.  We hit Dick's Sporting Goods and purchase his ankle weights so that he can practice on days that PT Lorraine doesn't come to the house.  Just carrying the 10 lb box is a workout for him!  We also stop by Boscov's so I can pick up some items.  Hon walks around because he's not interested in hanging out by the Clinique makeup counter.
Back in the car - we head to Kimberton to visit our dear friend Lois who recently came home from the hospital.  She and Hon get to compare doctor and health care stories!  Then we end our outing with a trip to - where else - the grocery store!!  Hon had already decided that he wanted roasted chicken, mashed potatoes and broccoli.
Back home Hon watches the NASCAR race on TV and I putz around the house doing different tasks such as gathering the trash, washing dishes and paying bills.  We are shocked to see a bill for over $1,500 that wasn't covered by insurance.  It says its for coronary care at Jefferson during the week that Hon was hospitalized back in January for the malnutrition/deyhydration/electrolyte depletion episode.  Now I know he wasn't really with it (that was his Twilight Zone/Spaceship period), so he can't remember any coronary care.  I read through his Discharge Summary and there is no mention of any coronary consult.  So guess that will be Monday's battle with Jefferson.   Bad enough we have to pay for TV/Phone each time Hon was hospitalized because no one explained to us that he had to choose to decline the services, otherwise it's automatically billed.  Now we're expected to pay for services we're not even sure he got!
Hon helps with dinner - he is the officially chicken-off-the-bone guru.  I don't like touching chicken, so this job always falls to him.  I notice that he's a little shaky again tonight, which is disappointing because he hasn't exhibited that for several days.
His water-barrier film patches arrived today.  So he is very excited that he can finally take a shower.  It's another arts-and-craft project to figure out how to get the patches (which look like Saran Wrap) over all his tubes and clamps, and we would probably have gotten a "C" for our efforts.  But we got 90% of the area covered and know what to do better next time.  After he finishes his shower, his bandages that were under the film are soaked.  So obviously we didn't do that very well.  So we dry the area and replace the bandages.  I notice that he has a puffy area on his lower belly, with a black and blue ring around it.
He falls asleep in his recliner and I amuse myself by trying to clip Smokey's back claws while he's asleep on the sofa.  Very tricky to do - clip nails and not wake up the cat.  Smokey isn't fooled that easily and he lets me know that he's not happy with my plan.  I give up on that venture and switch back to Hon.  I wake him up and tell him to go to bed.  As we're hooking up the tube feed, I see that the spot on his belly is now more swollen and I can actually feel a hard lump under his skin.  It can't remember if it's the site where I did his blood thinner injection (I really need to keep better track of which side we do each day), but I've never had the site swell up like this before.  Hon's face looks flushed so I go into worry mode and take his temperature.  It's 98.6 which is higher for him - he usually runs around 97.5.  So not sure what's going on now.  I'm just hoping there is no infection.  What a bummer ending to an otherwise great weekend!

Day 122:  Saturday, Mar 4
We appreciate weekends more than ever.  Not only do we not have to hurry through our morning routines, but we get the luxury of going on outings together.  Hon is especially excited because he gets a break from the IV feedings.  He has obviously been thinking about this day because he details where he wants to go and what he wants to do.  He gets up early, weighs in (up another 1/2 pound), makes the bed, sneakers on, pant hems pinned up and wallet and iPhone in his pocket.  He's ready to go by 8:30 am!
We do normal routines - stop at the Wawa to get his new newspaper - he goes in by himself, after chatting with niece Joan Marie in the parking lot, and makes his own purchase.  Then it's off to the bank and the post office. 

 Next we head to Tony's Family Restaurant where Tony, his son Anthony and daughter Julie Ann are so happy to see him.  Hon carefully picks out a safe meal choice - chicken steak hoagie - no mayo, no cheese, no seasonings.  He eats half of it which is very impressive!  After a nice visit we head to the grocery store.  We run into one of Hon's co-workers from the construction company and so goes another nice visit (car-window-to-car-window).  You can just see Hon's mood lifting every time he gets to talk to someone.  So these Saturday outings have become so important.  Not only to take in fresh air and get his vitamin D quota from the sun, but good for him mentally to get back to socializing.

Hon has decided he wants shrimp and scallops with baked potato and asparagus for dinner.  Wow!  Far cry from the chicken broth and applesauce we were painstakingly trying to force him to eat 2 weeks ago.  But it's very cold and windy today, and he got chilly sitting in the restaurant, so he's content to sit in the car soaking up the sunshine while I brave the cold wind and make the purchases.  Finally we finish our outing with a stop at Kim's Seafood to pick out the shrimp and scallops.  But we learn from the proprietor that he didn't pick up any scallops today - apparently the fishing boats don't go out daily this time of year because of weather - so we settle on flounder for Hon and salmon for me.

On the way home I mention that I see there is a box in my car's back seat that I didn't put there.  The following enlightening conversation ensues:
Hon:  Yes, that's the oil and filter for your car's oil change
Me:  And so have you figured out how my car is getting to the garage for this oil change?
Hon:  Yes, I'm going to drive it there.  I've been practicing.
Me:   (big eyes) Oh really.  And what do exactly do you mean by 'practicing'?
Hon:  I back your car out of the garage, go up the driveway, then back down the driveway and pull back into the garage (editor's note:  I've been running his truck back and forth to work this past week, so my car was readily available for this undercover mission)
Me:  (looking fretful) And so how did you do?
Hon:  Good.  The only problem is that your car's steering is so sensitive. But once I got used to it, I was fine.
Me:  (hands on hips)  So you didn't actually go out on the road - right??
Hon:  Oh yeah, I went down to the stop sign, turned around and went back down the driveway.
Me:  (starting to have a heat flash)  And how did you do with your weak leg muscles and handling the gas pedal and brake?
Hon:  Good!
Me:  (pacing) I thought it looked like my car wasn't in the same place in the garage.
Hon:  Oh it was in the same place - just maybe not exactly in the same spot!
Little stinker.
He didn't tell me because he knew I wouldn't approve.  I guess I should be somewhat thankful that at least he didn't try to make a real car trip on his own.  He did these practice sessions in small chunks to be sure he could do it safely.  Suddenly I feel like I now have a 16-year who just got his learner's permit and is chomping at the bit to hit the road.
Smokey and I took a nap in the late afternoon.  As I started to rouse from my happy nap time, I hear sounds I haven't heard in 4 months...the clanking of pans, the rustling of Reynold's Wrap, the opening and closing of the oven.  I walk out into the kitchen to see Hon actually cooking again.  He broiled the seafood, steamed the asparagus and microwaved the baked potato.  He looks at me and says, "It's ready!"  This is huge because that was our living arrangement B.P. (Before Pancreatitis).  I planned the weekly menus; Hon executed the plan; I was on clean-up detail.  Now I have the confidence that he is back to being independent with meal preparation.  And I'm back to just having to do the dishes.
God gave me a glimpse of our old life today - and it felt really good.
  
Day 121:  Friday, Mar 3
Today is the 4-month anniversary of when Hon's pancreatitis journey began.  When I read back through the blog entry about that day and the subsequent week in ICU, I am reminded of how wonderful the ICU care team was at Jefferson.   There was never a loss of nurses, technicians and doctors checking on him.  We felt so included in all the treatment plans and decisions.  Sad now to see how the plan seemed to get complicated and confusing, and the care and attention seemed to disintegrate.  Still not sure what we did wrong to end up being put on the back burner and why the communication just broke down.  People tell us that Jefferson is the best, but somehow we didn't get dealt those cards.  Disappointing that the relationship with that GI team just fell apart.
So on this 4-month anniversary, we look forward to a new, and hopefully FINAL chapter of Hon's story.  It's quite an amazing story, and I'm so thankful to have this blog to memorialize what happened.  What started out as a simple way to communicate with Hon's family and friends across Pennsylvania, across the country in New Hampshire, Maryland, Kentucky, Tennessee, Arizona, Nevada, Wisconsin and Texas, and even globally to Australia, quickly became my saving grace - a way to decompress, vent, grieve and find comic relief every step along the way.  Some day we will look back on this time - hopefully over a great meal of lobster and prime rib - as a distant memory.  But for now we need to keep riding the train and continue to anticipate the light at the end of the recovery tunnel.
Hon had a busy day with Nurse Victoria bright and early at 7:30 am, PT Lorraine at 11:15 (Hon said she really worked him hard today with the weights), Noontime Angel Cheryl and brother Gerrit.  In between he managed to fit in a waffle for breakfast, leftover chicken, broccoli and rice for lunch, and entire turkey burger with lettuce, tomato and a side of pasta salad for dinner. And the best news...HE GAINED 1 POUND TODAY!  Even Smokey was going the happy dance!!

So it's been another positive day.   So good to see him relaxing in his recliner, with the cat on his lap, reading his book,  But by 9 pm, the "sleepy-sleeps" settle in, and I catch him sound asleep, sitting up, with Smokey sacked out on the recliner foot rest. It's just a Man and His Cat snoozing.  Guess it's time to round up the ole IV pole and get them both to bed! 

Day 120:  Thursday, Mar 2
Today was a checking-just-make-sure day...many phone calls to make sure that nothing's going to hinder our switch to Univ of Penn. I've never had to "fire" a doctor before, so this is new territory for me.  So I call the insurance company to make sure it's ok to switch doctors.  The answer was simply, "No problem.  As long as the doctor deems the procedures to be medically necessary, it's covered.  You can pick any doctor you want if you're not satisfied with the treatment you're receiving."  I call the new hospital to double-check that my insurance is going to be accepted.  Very friendly lady tells me, "No worries.  We do all the behind scenes work to verify insurance and do the pre-certifications.  You'll only hear from insurance if something is wrong.  And if you do hear from them, just call us and we'll take it from there."   I call Hon's home health care provider to see if I need to do anything to ensure his coverage doesn't lapse.  The rep tells me, "No need to do anything.  We have that doctor in the system.  We'll give him a call and get his verbal approval to continue coverage."  This seems too easy.
Hon didn't have any visitors today except the normal Noontime Angel Cheryl and brother Gerrit.  He had a half of a rice cake for breakfast and the rest of the chicken noodle soup for lunch.  It was extremely windy today, so he only ventured out once to do a walk to the mailbox.  Gosh he's so lightweight now I think he was afraid he might blow away!!
Our dinner was chicken, rice and broccoli, a homemade freezer meal that co-worker friend Donna bought for me back in January when Hon was really sick and I was running to Philadephia almost every night.  She also bought me lasagna and a breakfast casserole meals, as well as chicken noodle soup and vegetable soup.  All the homemade frozen meals/soups came from a place in Telford, PA called BAM. The kitchen business has an interesting story - started by a woman after her husband Brett A. Moyer (initiatls BAM) passed away.  She remembered the kindness of others who brought her homemade meals when she was going through this rough time, and so when the opportunity came about for her to start a business, she wanted to do something that would help others who may be unable to cook meals.   http://bam.kitchen/index.html    Hon enjoyed the chicken/rice/broccoli so much, he actually had seconds!  That's the first time in over 4 months!

Day 119:  Wednesday, Mar 1
Busy day for Hon.  PT Lorraine arrived around 10 am to do his physical therapy.  It was good for me to be here and see the types of exercises she puts him through.  We need to buy weights.  PT Lorraine recommends the kind that wrap around your ankles or wrists, and have pockets where you can slip in 1/2 lb iron bars to adjust the total weight.  The maximum total weight of the pair should be 10 pounds.  Today he was up to 2 lbs per arm/leg.  The straight arm lifts really tired him out.  She had him walk inside the house with the weights around his ankles, but not too much since she figured we'd be doing a lot of walking today down at Penn.

We left the house at 12 noon and were blessed with very light traffic.  No backups, no delays and no Noah's Ark because it was actually sunny all the way down.  It was odd because this was the first time Hon went with me and was actually awake and looking around.  Usually the trips he went with me he was out of it because he was so sick.  The car wanted to follow the normal path to 676 to go to Center City, but instead we stayed on I-76 and exited onto South Street.  One right turn and we are now in University City, surrounded by a lot of medical buildings - Univ of Penn, Children's Hospital, Temple. It was easy to navigate to Civic Center Blvd.  Of course then the familiar question - which building and where do you park?   We made a left into a valet parking area to ask for help.  When I told him where we needed to go, he said, "This is the place!"  So God again directed us to exactly the right building.  He's better than GPS!

The valet parking was quite an operation.  Reminded me of arriving at the airport for departing flights.  Cars coming and going, people walking in, people waiting outside to get their rides...I had to smile as I thought, "Daddy would have been so impressed with their system."  Very organized and we were inside within a couple of minutes.  There was a nice greeter wearing a red coat in the lobby who patiently answered questions about where to go - poor man probably could tell we were weary travelers who had no clue, but he made us feel very welcome.We got checked in and see that we are an hour early.  So we settle in for what we believe will be a long wait.  But actually by the time we checked in and submitted our insurance information, they were calling our name to take Hon back to start the process.Our first contact is Mimoza.  She has a heavy Eastern European accent and talks extremely fast.  I became the interpreter as poor Hon, who already has trouble hearing, struggled to make out what she was saying.  She did all his vitals and declared his numbers were all "perfect".  She explains that we will now be meeting with the nurse who will ask us a lot questions.  She zips us down the hall and puts us in the exam room, chattering all the way.  After preparing the exam room for us, she zips out again - probably to go get her 10th cup of coffee - extra caffeine!   We are relieved for the return to calm and quiet.  We take a moment to look outside at our new landscape.  The promised land is very different than Center City - much more industrial out here.  And a lot of freight trains!

Next we met with Registered Nurse Sarah who confirms all of Hon's info and current meds.  So apparently they are able to access his information from somewhere.  It takes a while for us to get the med list corrected because they were still showing some meds that he's no longer taking.  She gives us some tips on talking with the Doctor - like how to pronounce his name.
When Dr. Chandrasekhara comes in, he tells us to call him Dr. Chandra.  Whew!  We can remember that.  He's very sweet,easy to understand and gets right to work looking at Hon's records on the computer.  We go through every procedure (all 6 of them) so that he can get a full picture of what's been done.  He asks Hon how Penn can help us.  Hon did a good job of verbalizing his concerns about how the care plan has seemed to diminish at Jefferson - people don't call us back, the doctor is very distant, we feel like we're not a priority anymore, and Hon thinks he should be further along by now than he is.  Dr. Chandra's opinion is that everything that Jefferson did so far has been medically correct.  He was surprised that they haven't scheduled anything more for Hon since his discharge on 2/15/17.  And he's really surprised that our next doctor appointment isn't until April 9.  Considering how Jefferson was aggressively scheduling the ERCP de-gunking procedures every 1-2 weeks, it seems odd that now they are leaving us hanging for so long with no plan.   So while he doesn't want to steal their business, he thinks that Penn can pick up on the care and get it moving again.  He wants to schedule another ERCP de-gunking procedure to make sure the dead tissue is continuing to be removed and possibly remove the liver stent (Hon probably doesn't need that if the cyst is no longer compressing on the liver).  The G-J tubes can't come out until Hon is consistently eating 3 regular meals a day.  We tell him that Hon is eating, but not very much quantity because he fills up so quickly - Doctor says that's typical with pancreatitis.  He checks Hon's last lab work and tells us that his albumin level is very poor which is an indication of low protein.  I give Hon the Grandmom Hughes high-eyebrow look because that's why he needs to increase the ProSource protein - the supplement that he has such an aversion to taking 3 times a day.   Dr. Chandra recommends we see a nutritionist.  While I really liked the Nutritionist at Jefferson, it was so hard to get to see her, and such a struggle to get them to create a plan for us.  So he writes us a script for a consult with a Penn nutritionist.  He tells us that we can go home, think about what we want to do, and that we won't offend him if we choose to stay at Jefferson.  Hon asks him if he could do the procedure today!  Bless his heart.  Dr. Chandra laughed and said he actually does have an opening tomorrow.  But we should take time to think about what we want to do.
By the time we are finished I see that this Doctor actually sat and talked with us for an hour.  Hon shook his hand and complimented him by saying that we'd learned more from him in an hour than we did from the Jefferson GI doctors in 4 months.  I can tell Hon likes him.  The thing that impressed us the most was that we actually got to talk to a doctor.  No going through a a nurse practitioner.  No 5 doctors in a practice and not knowing which one would be doing the procedure.  An actual doctor talked to us.  And he didn't just stand in the doorway and talk to Hon from afar for only 3 minutes.
As we sit in the waiting room to check out, I asked Hon what he thought.  Hon says, "I think I just became patient of H.U.P.!"  We sign up for an ERCP procedure on Monday Mar 13.  Unfortunately the Nutritionist only has appointments on Tuesdays, so she's booked up until April.  That was a little disappointing, but we make the appointment.  Perhaps we need to seek a nutritionist closer to home.
We go through the process to pay for the valet parking (done inside the lobby).  I start to pay and the clerk stops me to ask if I was there with a senior citizen.  It pains my heart because I see her looking over at Hon.  Hon always prided himself on no one knowing how old he was.  When he told people that he was 70, they always remarked that he didn't look his age.  Now he does.  Now people see him as "old" because his appearance has changed with the weight loss and the frailty.  We make our way out to the sidewalk to once again watch in amazement the choreography of the valet parking system.
Our commute home is another blessing.  Traffic is bumper to bumper headed eastbound, but we move right along with very minimal backups.  And no rain ... Noah didn't have to put the Ark plan into effect today.
We pull into Giant supermarket around 5 pm.  We decide to have turkey burgers with lettuce and tomato for dinner.  Hon pushes the cart and finds all the items.  It makes me smile watching him.
When we get home, I am starved.  Hon actually says he's hungry, too. Love hearing that. He only had watermelon for breakfast and no lunch because we were at the appointment.  While I'm making his turkey burger, I hear his work friend Butch come in the door.  Hon is so happy to talk to Butch and get caught up on the work news.  He definitely misses going to work.
So all in all, it was a good day.  God did go before us and was with us.  We feel revived with fresh, new hope that we can get Hon back on the road to recovery. 

Day 118:  Tuesday, Feb 28
Last day of February.  Who thought I'd still be writing this blog.
Hon's good streak continues.  His Home Health Nurse came this morning and it was reported by Substitute Noontime Angel Joanna that the nurse was impressed with Hon's progress.  He did 2 sets of outdoor walking and ate 3 meals:  peaches for breakfast, chicken noodle soup for lunch and hot turkey/gravy/mashed potatoes for dinner.  But he lost 1/2 a pound from yesterday to today.
He's noticing that when he drains his stomach each day, he's getting less and less "gunk" coming out of the tube.  I think that means more of his intake is actually working its way through the digestive system rather than just sitting in his stomach.  I also think the cyst has dramatically reduced and there's less fluid and dead tissue draining from the cyst into this stomach.
Tomorrow we head down to University of Penn to meet "Dr. C" for a second opinion.  I'm armed with my Ken Care 3-ring binder and an envelope filled with CDs - Hon's numerous CT scans.   I am a little uneasy about the appointment because Hon has shown no signs of illness or discomfort.  Makes me wonder if we should be going at all.  I don't want it to be a waste of time.  Kind of like when you make an appointment at the garage for your car and then suddenly the car stops making the annoying noise or stops running rough. The new doctor may think it's odd that we're there when Hon's been feeling good, eating, and getting around.  I'm sure he is also going to ask us what questions we have or why we sought out a second opinion, so I decided we better practice tonight.  Hon says he wants to know if Jefferson is doing all the right things.  He wants to know if he's progressing at the right rate.  He wants to know if there is anything else they can do for him.  I'd like to know if we should be doing any other advanced therapy to help Hon get stronger.  We don't have a follow-up appointment with his Jefferson GI team for another month.  You would think they would want to see him sooner than that, especially to explore the possibility of getting the G-J tube removed.  I also want to know why he's losing weight when he is now eating whole foods.
Of course the weather in the Philadelphia area is supposed to be just horrible tomorrow.  And we have to go to a new location that we've never traveled to before.  It's been 14 days since I've had to drive the Schuylkill Expressway.  Hope I haven't lost my city driving skills.
Several times today I heard this verse quoted...The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged (Deut 31:8).  This is what Moses said to Joshua right before Joshua was getting ready to lead the people into the Promised Land.   So I pray that tomorrow we will be strong and courageous as we head into new territory.  It feels like we've been wandering around the desert for 40 years, but God has seen us through a lot,   Now we seek wisdom and guidance to either confirm that we stay the course with Jefferson, or whether we need to switch tracks and go a different direction.  And we pray that we don't pass Noah driving an Ark down the rainy Schuylkill Expressway!!

Day 117:  Monday, Feb 27
Nothing too exciting today - no health issues, no hospital visits...it feels good to be boring.
Hon ate Cream of Wheat for breakfast, sister Joanna stopped by to be the substitute Noontime Angel to do meds and protein, he had popcorn for a lunch snack, and leftover flounder and pasta salad for dinner.  I had to make another batch of pasta salad because he's going through it so quickly.   
We are amazed at getting a bill for TV and phone use at Jefferson Hospital during his last stay.  $77 dollars.  Apparently they automatically charge rent daily for the TV and phone, even if you don't ever use them, unless you tell them you DON'T want them.  And they really don't TELL you about this arrangement;  you have to read about it in the brochure that they nonchalantly lay on your tray table.  Heck, we've had so many hospital stays, we stopped looking at that brochure long ago.  Sounds like a real sneaky racket to me.
He was pleased to receive Get Well cards from niece Susan and her family from the Williamsport area, my aunt and uncle from Frederick, and Kimberton friend Donna who is still enjoying her snowbird time in Florida.
Other than that, his day was pretty generic.  We're not complaining.  His visiting nurse is due here early Tuesday morning.  Here's to a big old cup of continued good health sprinkled with a little bit of progress in eating tomorrow.

Day 116:  Sunday, Feb 26 - Daytona 500 Race Day
Hon actually got up before me this morning.  I think it had something to do with the fact that Smokey tried to knock him out by pulling down the glass globe covered candle that sits on a shelf above the bed.  Missed his head by inches.  
He didn't want a lot for breakfast, but did eat some watermelon.  Brother Gerrit came with the Sunday paper and they chatted while I cleaned bathrooms and did laundry.  His brother gave us our partial refund for the river cruise trip to the Netherlands that the two of them had planned to do in April.   We waited too long to make the decision to cancel because we were clinging to hope that things would take a turn for the better.  But finally we gave in to the reality that Hon just wasn't going to be strong enough by April to endure all the walking and activity.
We head out to do our Sunday outing.  We go in the truck this time.  Hon has a little trouble getting up into the truck because he doesn't have the muscle strength to pull himself up into the cab.  But it's good exercise for him.
We drive around and Hon gets a chance to see some new construction taking place in the community.  Then we head to the local pharmacy to see about getting waterproof transparent film to cover his tube sites because he desperately wants to take a shower.  The washcloth baths are just not enough.  But they don't have the large sizes that the hospital used, so we decide to just order online from Amazon.  Next we head to my mom's to visit with her and brother Kenny.  Our visit time overlaps into the start of the Daytona 500.  So Hon got to watch the beginning of the race on their nice flatscreen TV while he relaxed in my dad's recliner.  We got to show my mom where our seats would have been, the nearby airport where we would have flown in and out of, and teach her about all the little facts we've learned about the track and race.  It was a bittersweet moment when the race actually started.  We could almost feel the crowd, the deep rumble as the cars come out of Pit Road, and the entire atmosphere, as if we were actually sitting in our seats with the sun shining on our faces.  This year we experienced Daytona from the comfort of a living room - no sunscreen required.   
When we came home, Hon continued to watch the race, but he was pretty quiet and looked kind of pale.  He did eat some salsa and crackers for a snack, but not too interested in "lunch".  He did take a nap during the race and I had to wake him to watch the end.  He ate a good dinner - hot turkey in fat-free gravy, mashed potatoes and pasta salad.
Not as active and talkative as yesterday.  Not sure if he was just tired from Saturday's activities or if he was just thinking about missing the race and missing out on the Netherlands trip.  He didn't really seem to want to talk too much today and was ready for bed by 8:30 pm.  I made him Cream of Wheat so he can just reheat tomorrow, and counted out his pills for the week.  Tomorrow it's back to the 24-hr tube feed tether.  Vacation is over.

Day 115:  Saturday, Feb 25
I gave Hon a free day today - free of 24-hour tube feed.  Because he deserves a day of freedom from being tethered and tied to staying home.  He lost another pound since Thursday, but he's been doing so much better with eating, so my hope is that we will catch up on the weight through regular food.  So we threw aside the tube feed and planned a day out of the house.  It's another amazing day of 70 degree weather and we want to take advantage and blow the cobwebs off him!  After Hon ate a waffe for breakfast, we gather up our errand items, don our shades and hit the road.  It's as close to Daytona as we can get!!

Our first stop was the bank.  Hon walked in with me and was happy to reunite with the bank ladies whom he enjoyed seeing every Friday when he cashed his paycheck.  Of course they haven't seen him since November, so they were obviously shocked by the dramatic change in his appearance with the weight loss.  They were very kind in showing their concern and listening to him tell his story.  I can see his spirits were lifted just getting to see them.

Our next stop was the Wawa to get his paper.  He came in with me and picked out his own newspaper.  I have to give him money because he doesn't have his wallet.  He reminds me that this is the only reason he let me come along - for my money.
Next we head to Pottstown Post Office to mail 40 parcels...yes 40.  This time he's ok with sitting in the car reading his newspaper.  He knows I'm going to be awhile.

Next we head to the grocery store so he can pick out something for dinner.  He looks like someone who just got rescued off a remote island and is trying to catch up with society.  He wanders around the grocery store (I let him push the cart to give him some stability while walking) in a trance.  I have to remember it's been over 3 months since he's been in a grocery store. I try to let him be as interactive as possible to give him some independence.  He's gotten so used to me doing everything, I have to stop hovering.

We work through the list and head to the self-check out where he does the scanning and I do the bagging. He unloads the cart and even puts the cart back in the corral.  By now he's ready to go home.  But I am amazed at his stamina.

Upon returning home we get a visit from Hon's sister Joanna and her husband Ken.  Joanna got Hon a nifty stylus for his iPhone - it plugs into the earphone jack, thus eliminating the need to carry a stylus separately.  It was great to see him actively participating in the conversations and Smokey was thrilled that he finally had some humans who took the time to play with him.  Unfortunately Smokey sometimes has to wait for lovin' when Hon and I are busy going through his care routine each day.

The deal was that Hon could stay off the tube feed today as long as he ate regular meals.  So he was quite agreeable to eat a 1/2 a sandwich for lunch - multi-grain bread, turkey, tomato and lettuce.  He dives right in and again I am shocked that he eats the entire half with no struggle.   He spends the rest of the afternoon watching the XFinity Series race at Daytona on TV.  He watches the entire race - no snoozing.  He did better than I did!

If we had been in Daytona, after the race we would eaten at either the Aunt Catfish or Our Deck Down Under restaurant.  This year we have to improvise the experience, so we made our own broiled shrimp with lemon and pepper paired with homemade pasta salad.  Hon was actually looking forward to this dinner and not only finished his entire plate, he went back for seconds!   Next time I look over, he sitting in his recliner reading his book.  Before Hon got sick, he was an avid reader.  He would go through 2 novels in a week.  But after he got sick, he showed no interest in reading, and that seemed so disappointing for many of us who knew his passion for reading.  So not only is he getting his appetite and taste buds back, he's starting to return to his regular routine.  I can't stop taking photos of him - I'm just so tickled that he's having such a great day!

Tomorrow we plan to do another outing to take a tour through some local areas so he can see recent construction improvements;  try to find a source for a transparent barrier film that we can use to cover his tube sites so he can take a shower; and go visit my mom and brother.
The day was actually stress-free and fun.  It was also a huge step in his recovery - he's a walking miracle.  With each activity I saw him gaining stamina, momentum and confidence.  God is good.  As the song lyrics say....Great is His faithfulness!  Morning by morning new mercies we see.  All we have needed His hand has provided.  His own dear presence has cheered and guided.  Strength for today and bright hope for tomorrow.  Blessing are all ours, with ten thousand beside!

Day 114:  Friday, Feb 24
We have made it seven whole days without any health issues or hospital visits for Hon.  Hallelujah.
Normally on Friday nights we'd be heading out to dinner for date night.  But tonight we do date night at home.  I had my favorite - Sicilian pizza - and  Hon had a 2-item dinner - a small piece of broiled flounder and 3 tablespoons of mashed potatoes.  (Ok...no judging out there..I know he had the more healthy choice...but the rules are you're allowed to have whatever you want on date night!)  Anyway, Hon ate his right up - no left overs tonight!
Our date included going to the Daytona Truck Races ... via TV.   But some things stay the same...I'm still slightly lost with all the format changes - stages, playoffs, etc.  Just when I think I've got it all figured out from the previous year, they go and change the rules!  Normally I would just go to fair friend Kevin after the race and bug him with my standard line... "Now I have a question!" - and he would patiently explain it.  But this year I have to rely on my date Hon to try and answer my non-stop questions.  With missing so much lately, he doesn't really have all the answers, so he tells me to just make notes of race questions and ask Kevin when we see him again!
Hon had another full day.  Nurse Victoria was here in the morning and PT Lorraine came in the afternoon.  Noontime Angel Cheryl came with husband Steve and grandson Anderson (poor Smokey just doesn't know what to do with little Anderson).  Then Hon had a surprise visitor - one of his dear friends "Mitch" who stayed for over an hour - and last but not least brother Gerrit.  In between Hon was busy practicing with his iPhone, answering texts from friends and family who just want to reach out and encourage him about his run of good health.  He is getting to be a real text-master. 
He had a rice cake for breakfast (ate the whole thing, but it really filled him up for several hours) and popcorn for a snack.  He also finished his Ensure chocolate shake (took him 3 days, but he did it!)  Sadly, we read through his Nutrition paperwork and discovered that Hon isn't supposed to have chocolate - because of the high fat content, I guess.  I feel bad that I didn't catch that earlier and now we're stuck with 3 bottles of chocolate Ensure shake left.   The shakes have 11g of fat - probably because they are chocolate.  But since it took Hon 3 days to drink 8 oz, that's really only 3.5g of fat per serving.  Since he's tolerating it, he says we will slowly work through the remaining bottles and then I'll just have to switch to the non-chocolate version.  But as far as anything else chocolate such as candy, sweets, etc. it's a no go.  What a bummer diet...no chocolate, no cheese.  They are like the staples of life!!
We talked about upcoming nurse, PT and doctor schedules and appointments.  Hon was very decisive that he wants to go to the second opinion doctor appointment at Penn next week.  So onward we go.
My date goes to bed around 9 pm and I'm left with the hosts from QVC to finish out my Friday night.  Even Smokey bails out on me by sleeping in the window sill, taking advantage of this unseasonably 70 degree warm February weather.  Doesn't sound like the greatest date night for most, but for me, it beats spending it cleaning up after a sick Hon - laundry, disinfecting bathrooms and shampooing bodily function accidents on the carpet   I'm breathing easier and that's the best gift I could have on this Friday date night.  .
Ironically today's Scripture verse in my daily Today's Word email was encouragement to press forward...
"Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you."
(Matthew 7:7).

On the Way to Your Yes

Sometimes, people get discouraged in life because things didn’t turn out the way they hoped. But one thing we have to learn is that God honors perseverance. On the way to your “yes,” you may encounter some “no’s.” You may encounter some closed doors, but that doesn’t mean it’s the final answer. It just means “keep going.” Remember, if God promised it, He’s going to bring it to pass. Scripture tells us that through faith and patience, we inherit God’s promises. This is where patience comes in; this is where perseverance comes in. This is where trust comes in. Just because you don’t see things happen right away doesn’t mean you should quit. No, instead, rise up and press forward. Keep believing, keep hoping, keep enduring and keep asking because our God is always faithful to His Word." (by Joel Osteen Ministries)

     
Day 113:  Thursday, Feb 23
Another good day for Hon.  I receive a lot of encouraging emails and texts from blog-watchers who are so happy to read about Hon's good stretch of health.  He lost another 1/2 pound of weight, but he is now asking about food and interested in what we are having for dinner!  And when he does eat, I notice that he no longer lingers and picks over the dish.  He eats it right away and completely.
Did the mailbox walk twice - this stretch of Florida-type weather is such a blessing, allowing him the opportunity to get outside.  It's lifting his mood plus giving him good exercise time.  He is so excited about the 70 degree weather tomorrow and Saturday.
We watch a little bit of the Daytona Duels on TV and wave at the TV...hoping that fair friends Kevin and Shirley can sense how much we miss being down there with them.  Hon just shakes his head in disappointment.  But then I try to break the mood by talking about what we would have been doing tonight down in Daytona, and Hon recites a list of all the stuff he's missing...Shirley's homemade strawberry pie, the orange juice and fresh fruit from the Farmer's Market, and the dinner places we would have eaten at before packing up and heading to the track to watch the Duels "under the lights". 
He's becoming quite adept at texting on his phone.  Cracks me up to see him sitting there checking his iPhone - like he's done it all his life.  I don't know which miracle is more amazing - Hon's rapid recovery or him using a Smart Phone!
Food intake was interesting.  He couldn't  make up his mind, so he decided to eat a slice of deli turkey for breakfast.  I can tell he's already getting bored with the limited choices.  But he experienced stomach discomfort after lunch, even though he hadn't eaten any lunch.  He drained his stomach through the tube and then felt better.  He did have some more of his Boostie thing (choc protein shake) but is still working on the same bottle since Tuesday.  He did eat elbow macaraoni with a little bit of marinara sauce for dinner (I spent some time researching low acid jarred spaghetti sauces!), plus he enjoyed the popcorn that I picked up from the grocery store (4th trip this week - I went to self-check out to avoid the stares from that check-out guy).  Hindsight - I should make my own spaghetti sauce which can be de-acidfied through use of baking soda or by choosing tomatoes without seeds.  And it would probably be better to buy kernel corn and pop it ourselves because again we can control the ingredients.  Sounds like weekend projects when I am more coherent and not so tired after work.  Tomorrow he wants to try flounder and mashed potatoes.  So Friday will round out my 5th trip to the store.  I think I might try Kim's Seafood in Kimberton - I don't think I can handle hitting Giant one more time this week! 
As I'm standing in the Snack aisle tonight looking for rice cakes and trying to find a popcorn choice that doesn't include butter or salt (not an easy task!) I received a call on my cell phone from Margot Dinniman - Senator Dinniman's wife who was featured in an article in a Mainline Health publication.  Kimberton friend Mike contacted the Senator out of care and concern for Hon.  The Senator wanted to reach out to us, and Mrs. Dinniman called to offer her support and to highly recommend Dr. Etemad at Lankaneau.   As I stood among the potato chips, pretzels and nacho chips, Mrs. Dinniman shared her experience with pancreatitis.  Some parts were very similar to Hon's experience - the pseudocyst, the pain, the loss of weight and muscle and the problems with other organs.  Other parts are very different.  She was hospitalized constantly for months - not in and out like Hon was; was in a coma in the beginning, and ended up in Bryn Mawr rehab to relearn how to walk.  She is very passionate about Dr. Etemad and would highly recommend seeing him for a second opinion.  She is also willing to meet and talk with Hon so they can commiserate about their shared experiences.  Hon was really pleased to hear that she took the time to call me.  I think he might want to meet with her.  So thank you Kimberton friend Mike (and MaryJo!)
So now we have decisions to make.  We already have a second opinion appointment with a GI doctor from Penn next Wednesday.  Hon is on the fence about whether or not to go.  Since he's been feeling better, he now isn't as disillusioned with Jefferson's GI team.  The urgency to seek the greener grass isn't so strong now.  Being distanced from Dr. Serious and the city hospital for 10 days has made it easy to forget the frustration.  So I ask him to think about it tomorrow and let me know.  We either cancel the 2nd opinion appointment, schedule a different appointment with Dr Etemad at Lankaneau (which would probably not be available until April or May because the guy is a miracle worker), go to both 2nd opinions, or do nothing and stay the course until Hon's follow-up Jefferson appointment on April 3.
So Lord, here I am again, at your feet asking for wisdom and guidance as to what to do.  We've been given many options.  Help us make the right decision.
 
Day 112:  Wednesday, Feb 22
Hon was on a roll today.  Up, dressed, sneakers on, he was ready for the day.  It was a full schedule.  His home health care nurse Victoria came between 9-10 am.  She sends me a text that says, "Hey, I just left Ken and he's doing well!"  This was quickly followed by the Home Alarm company salesman who came out to discuss possibly upgrading our 30-year old house alarm system.  He doesn't text me, but apparently he and Hon have an interesting discussion about me and the need for indoor security cameras.  Hmmm.  Not sure I want to know what that was all about.  Then Noontime Angel Cheryl texts me to report, "Hon is still doing great.  Made one trip so far to the mailbox."  And Hon proudly tells me later that he didn't even have to take a rest break this time. 
Hon is also happy that Noontime Angel Cheryl will be bringing little Anderson back on Friday for another visit.  Not sure Smokey shares the excitement that the pint size person is returning.
No nap today because Hon has decided too many naps make him tired.   When I get home he's putzing around turning on lights, closing the window that he opened so Smokey could sit in the windowsill and enjoy the 60 degree February day, and getting a cold water bottle from the fridge. 
His Jefferson doctor's office called him today to schedule his follow-up appointment.  Unfortunately it's not until April 3.   If Hon continues to improve at this rate, they won't recognize him!  So we talk about how we have to get a CT scan and blood work done before the March vascular doctor appointment and the April GI appointment.  I make a comment that we need to find someone to drive him to these local - yeah! - tests.  His response?  "I can drive myself!"  I give him the Mom-Mom Hughes famous raised eyebrow look and reply that he's not ready to drive yet.  His response?  "My discharge instructions say I have no restrictions on driving...in fact it says I can even go back to work!"  I quickly grab his Care Book and look that up - I can't find where it specifically says that.  Oh boy.  We've gone from a Hon who couldn't even open a soda can to one who now is ready to take back the world.  It is nothing short of a miracle how he's rebounded these past 3 days.  His energy is higher, his mood is brighter and obviously the mind is going!
I find myself in a strange place - after months of doing everything for him, being the primary decision-maker, and putting many things on the back burner to concentrate on his care, now suddenly he's wanting to do for himself.  Which of course it's what we all want.  But I wasn't prepared for the speed with which he would start to improve, so now I have to start to prepare myself to back down gracefully from this full-time care-giving job and give him the space to make his own way towards recovery. 
Hon's food intake today was a little more adventurous.  He had a REGULAR waffle which he declared was SO much better, drank another 1/3 of his "Boostie thing" (what he calls the protein chocolate shake), and a salad for dinner.  I prepared and delivered his salad, and by the time I came back into the room with my dinner, he had finished it all.   What a wonderful sound to hear that fork quickly clinking against the inside of an empty bowl!  He is now interested in looking at the Low Fat food options paper that the Jefferson Nutritionist gave us back in December.  This is a good sign that he's starting to think about food.  The most telling sign was the way he was eyeballing my sloppy joe sandwich and oven fries.  He doesn't say anything, but I can tell he's on the edge of asking for some.  He decides that he'd like to try the popcorn and rice cake options.  And maybe pasta, although he's still leary about trying tomato-based sauces even though there is no reason he can't have sauce.  I told him I will buy him anything on that list "approved" list.  So looks like I'll be back at the grocery store again tomorrow night.  Hope that same checkout guy isn't working...he's going to think I'm stalking him!
 
Day 111:  Tuesday, Feb 21
I read a quote today that said, "Accentuate the positive; eliminate the negative".  Those 6 words made me realize that I am starting to get down about all the obstacles, disappointments and slow progress.  And I'm sure the Devil and his little demons are having a real party watching me sink into the depression and isolation.  So tonight's blog post is dedicated to all the positives that Hon has had over the past few days.
Today he was up and out to the family room before I had all my morning routines completed.  All the vitals were wonderful and while the loss of another pound was not what I hoped for, I'm staying on the high road here because I had real hopes that he would have a better eating day today.  And he did.
He ate the rest of his Cream of Wheat that he had made for breakfast on Thursday.  I asked him to at least try the Boost protein shake today, and he did.  He said it was "OK".  Too thick and a little too sweet, but he did try it and drank about 1/3 of the bottle.  He took his walk up and down the driveway and even brought back the garbage rolling tote from the end of the driveway.  When I came home after stopping at the grocery store (for the 3rd time this week...the checkout guy is starting to recognize me) to buy REGULAR waffles, lemonade (he loves lemonade and it's high calorie) and cranberry juice (for hopefully the ProSource Protein cocktail he will try tomorrow), he was wide awake and in good spirits.  He actually uttered words I haven't heard in 110 days..."What do you have for me for dinner?"  Music to my ears.  He ate mashed potatoes and a small slice of deli turkey breast.  And he cleaned his plate.
When I look back over the past few weeks, there hasn't been much to smile about.  And I get lost in the minutia of the caregiving.  And so it's easy for me to miss the very small baby steps that we're making.  Just the fact that he's staying up longer, eating better than 2 weeks ago, and being more animated and interactive is a big deal, and so I want to highlight that tonight.  We still have a long way to go, but we're in a much better place tonight than we were 2 weeks ago when we were sitting in the germ pool at Jefferson's ER with his puke bag.
The best positive is all of the wonderful people who take the time to check this blog daily (some tell me it's become part of their morning coffee routine!), are rooting for Hon's recovery, send cards, call to check on us, brainstorm nutrition ideas, stop by for visits, put us on numerous prayer lists, go grocery shopping for us, and just keep us in their thoughts.  We are the most blessed people for having all of you in our lives.  I hope someday that Hon will fully realize how much he has been loved by all of you.  I'm so grateful for the way God is using each one of you as little points of light to guide us through this dark time.  
So be gone negativity...the Devil is going to have to get his kicks somewhere else tonight.  Because we are celebrating the positives!  

Day 110:  Monday, Feb 20 - Presidents' Day
Hon got up in a good mood - even made the entire bed by himself!  We do our normal routine of vitals which are all good.  I show him how we can keep track on his new iPhone - it puts all the data into a graph format so you can see progress (or lack of).  I ask him if he sees that his weight is declining every day to which he responds, "Yea, but my weight didn't go down since Sunday!"  I guess that's one way of looking at it.  Today he weighs in at 146 lbs.  I try and give him his protein treatment and he decides he's going to do it himself and then Noontime Angel Cheryl can do another one.  He promises to try and eat a waffle today.  I put it in a baggie on the counter and say a little prayer that it's actually gone when I come home.
Noontime Angel Cheryl gets here and reports in.  He did not take an earlier protein supplement, so she does the one at lunch.  He did eat the waffle but was holding off on lunch because PT was due to arrive.  He had already made 2 trips up and down the driveway by himself.  Thankfully she calls in a refill prescription for his Metformin and goes to pick it up.  He's giving her a hard time about the protein supplement, too and tells her he's cutting back.  Well, it's very important - he can't "cut back".  Meanwhile Pilot Club friend Bonnie calls with a suggestion of mixing the protein supplement with cranberry juice and ginger ale - sort of a cocktail concoction that he might find more appealing to drink.  At this point, I'm game for anything that will get the protein into him.  It will definitely aid in the healing process and strengthen his muscles.  Noontime Angel Cheryl makes the suggestion to which Hon replies that he'd consider mixing it with bourbon or gin.  If he doesn't start eating soon, I may be converting to bourbon and gin.
I am weighed down all day with this sense of frustration of his losing weight and not wanting to take the protein supplement.  Friends and Co-workers kindly offer remedies - smoothies, protein shakes, Ensure, even a counselor...but the bottom line is he doesn't think he has a problem and he seems pretty content to just keep coasting along at 35 mph when we should be passing this phase at 65 mph by now.   I stop at the store on the way home to pick up a 4-pack of Protein Shakes that I'm hoping he'll drink.  Otherwise it's just $10 I wasted.
When I get home, he's reclining on the sofa but not sound asleep as I usually find him.  He's in a good mood and tells me how he walked 4 times up and back on the driveway - twice by himself and twice with PT.  He didn't eat anything for lunch but does eat mashed potatoes for me for dinner.  And he tells me while he ate the waffle (which was whole wheat), he likes REGULAR waffles, so not so thrilled with the whole wheat.  Now the one who won't eat is getting pretty picky.
By 9 pm he's sound asleep - must have been all that fresh air today!  So off to bed, hook up the tube feed and it's lights out for him.
Tomorrow will be a new day of eating negotiations, I'm sure.

Day 109:  Sunday, Feb 19
Hon's good mood and "feeling good" continued today.  He was treated to a mani and a pedi today by Nail Stylist Me.  Smokey wanted to put his paws in the foot bath as well - he really needs a manicure, too, but he's not a good tipper!
We didn't do very well with the eating department, however.  Hon did agree to eat 1/2 of an English Muffin with sugar-free jam, but wouldn't eat anything lunch.  I hung around the house most of the day until I had to leave at 2 pm for a meeting and then down to my mom's.  His job after I left was to eat a snack and take his regular meds.  Yet, he became a couch potato around 3 pm when the Daytona races came on TV and woke up in time to see the 2 guys who qualified for the front row of that big 500 race that we're not talking about because we can't go this year.  He did agree to eat mashed potatoes for dinner and actually ate the entire (yet small) portion that I gave him.  But he didn't do anymore treatments and didn't take his regular meds.  
Again, he only let me do the protein treatment once.   When I ask him what's so bad about the protein treatment, he replies that it makes him feel funny.  I read the label tonight - the Nutritionist told me to measure out and add a little bit of water.  But the bottle says to dilute with 30 ml of water.  So I will try adding more water and maybe that will help.
Other than brother Gerrit who brought him his newspaper, he has no visitors today.  So he watches TV until he goes to bed around 9:30 am.
Going to be a busy week.  Home Health Care PT on Monday; Home Health Care Nurse on Wed and Fri, and a home visit from our alarm company on Wednesday.
Thank you to everyone who's been following our journey on this blog, and for the support and suggestions you have given.  Tomorrow's tasks will be to look into having a water cooler in our home (so that we're flooding the landfills with all these plastic water bottles!), finding an iPhone stylus that Hon can velcro to his new phone, look into Visiting Nurses about coming in to make sure Hon takes his meds and eats, and finding a Registered Dietician to help us.
 
Day 108:  Saturday, Feb 18
What a difference a day makes.  Hon wakes up feeling good.  He's alert, engaged and his spirits are positive.  No diarrhea or vomiting overnight.  Progress!  Again I try to impress that he needs to help himself with Imodium when he gets into a flurry of diarrhea episodes!  He gets himself up, dressed and out to the family room with no assistance.  He even asks me to wash his hair (he can't take a shower because the tube sites can't get wet, and we don't have the protective film they used in the hospital to cover the sites).
We do his vitals - he has dropped another 2 pounds.  This is still an area of frustration for me but yet seemingly not for him.
While I putz around still cleaning and organizing, he does his banana flakes.  He lets me make him Cream of Wheat and eats the entire, yet small, portion that I give him.  Progress!
A quick call to the hairdresser (I need a hair cut so bad!) in hopes of a cancellation gets me an appointment in 20 minutes. I'll take it!  Hairdresser Sharon agrees to stop at the house after work to shave Kenny and give him a haircut.  He had wanted to go to the barber for 2 weeks, but back-to-back stays at Jefferson put the kabosh to that idea.

Now he looks  better - to me...I know there are those out there following the blog who prefer the mountain man look; but not me.  The only problem with being clean shaven is now you can really see how sunken his cheeks are.
He stays upright in his chair all day which he hasn't done in a while.  He watches TV and visits a little with brother Gerrit.  Today is the start of the practice runs for the Daytona 500.  Normally we would be making preparations to get out our spring/summer outfits, dust off the suitcases, and make arrangements for someone to take care of Smokey.  Next Wednesday night we would have been flying down to stay with friends Kevin and Shirley for 5 days.  But this year we will be watching the races from the comfort of our family room.  Right now we don't talk about it.  That way reality doesn't hurt so much.
It's a beautiful spring-like day with temps in the 60's.  So I ask Hon to walk up to the mailbox to get the mail.  Progress! 

He has to stop and rest 2 times, but that's ok - our driveway is all uphill and he really hasn't walked any inclines.  Just the 150 feet in the hospital - back when Jefferson PT determined he's perfectly independent with mobility.  He comes back looking pretty beat, so a nap is approved by Rehab Trainer Me.
I head out into this teaser of a spring day to fix Hon's cell phone situation.  Thanks to the sister Joanna, Hon now has an older model iPhone to use.  The Sprint store gets it all set up for him.  Now it's my job to sell him on using it.  Hon was still one of the few individuals in America who was still hanging on to his flip phone with a keypad.  He's always been resistant to the newer touch-screen technology - or anything resembling a computer actually.  I type in all his Contacts and we have Training Session #1 - texting and sending photos.  Luckily brother Rich in Kentucky had sent a text so we have training material.  Hon's big fingers had a hard time with the small touch screen keypad, so frustration started to bubble up.  "I thought you said this was going to be easier," he grumbles.  But I quickly fetch a pen that has a stylus on the other end, and that does the trick. Progress!   He was doing so well, he even put all the letters in the words!  Usually he would omit all vowels to cut down on the amount of typing he had to do with the flip phone, resulting in text messages that looked like a puzzle you'd see on Wheel of Fortune.  I'd like to buy a vowel, Pat!!
Hon's total food intake was 3 tablespoons of Cream of Wheat, 1/2 of an applesauce cup, and about 3 tablespoons of homemade mashed potatoes.  Well, at least I got him to eat 3 times today.  Progress!  We only got to do 1 treatment of Protein.  He gives me a hard time in the evening about treatments - says he just feels so full, and motions with his hand where his esophagus and stomach meet.  Apparently, from what he tells me, he gave the nurses at the hospital the same resistance.  I've got to come up with a better plan to get that protein supplement into him. Too bad we can run that through the feed tube.  Then it would drip in slowly over 4 hours rather than having to flood his small intestine with it all at once.  But the stuff is so syrupy that we're afraid it will clog up the tubing.
So overall, a very positive day.  Made a lot of progress.  Weekends are so much better than week days.
  
Day 107:  Friday, Feb 17
Hon's night was pretty good;  until about 5:30 am when his diarrhea came back.  So we had clean up and laundry from that.  Then he while he was draining his stomach tube, he missed the collection container and the rug and recliner took a hit.  More clean up.  Then while he was doing his banana flakes, the J tube leaked onto the sofa and rug.  I leave for work needing a nap.
Our house had a revolving door today.  Many visitors to see Hon.  First his home health care nurse Victoria started the day at 8 am.  Vital signs were all good, except for the weight which is down another pound.  She is planning on coming 2X a week.
Noon time Angel Cheryl arrives for meds and wellness check.  She reports that Hon is looking and sounding good.  No reports of any vomiting or diarrhea. He had applesauce for breakfast and was thinking about lunch.
Other visitors arrive including brother George, brother Gerrit, forever friend Diane and neighbor friends MaryLou and Russ.  Smokey is in his glory as everyone fusses over him.  Brother George even brings Smokey a new mouse toy.  Hmmm...looks identical to the one that I caught in the trap down in the basement yesterday.  Perhaps Smokey can study this one and get motivated because, amongst everything else we're going through, I've had to deal with 3 dead basement mice in the past 2 weeks. 

Hon was always the "coroner" in these situations.  He took care of the bodies.  But I'm now having to be a big girl and learn to extract dead mice from traps all by myself.
From all reports, Hon is having a pretty good - and busy - day.  So when I get home and see him sound asleep on the sofa, I'm not overly surprised.  So I settle down to making myself a grilled cheese sandwich for dinner.  He wakes up and looks very forlorn.  When I ask how his day was, expecting to hear all about his visitors, he tells me he's had major diarrhea since 2 pm.  One time he had to go 3 times in 10 minutes.  He had to try and manage all that around the visitors.  He's exhausted and disgusted.  My grilled cheese is now put on the back burner while I try and get him situated.  I finally convince him to take Imodium for the diarrhea and try to impress upon him that he needs to take that as soon as diarrhea episodes begin - not suffer all day with it.  Once he takes the Imodium, and his regular meds that he never took today, he starts to perk up a little.  So now I get to hear stories about all the visitors.  And I get to eat my grilled cheese sandwich.  He tells me he ate nothing all day, so not sure if he even ate the applesauce this morning because I see no evidence of the packaging in the kitchen.  And he didn't do any more of his banana flakes or protein supplement treatments, other that what he did for me this morning and for Noon time Angel Cheryl at lunch.
After I put him to bed, I go about the business of laundry and shampooing rugs and his recliner.  I wonder if the Medical Director at the insurance company who denied our request for Hon to go to skilled nursing is having a better Friday night than I am.

Day 106:  Thursday, Feb 16
Hon woke up with a new attitude today.  He must be feeling a little better because he is showing a little spitfire now over the whole being denied rehab situation.  So he determined that if everyone thinks he's so independent, then he guesses he might as well act it.  He announces that he is going to make oatmeal for breakfast.  This decision comes right as I'm ready to walk out the door to go to work.  So now I'm thinking..."shaky hands, stove burner" and I decide I'd better stay for Chef Hon's cooking class.  It takes a while, but he does get it done.  Had to hold on to the arm that was navigating the ingredients into the pot to keep from shaking.  He complained that I had bought the cooking oats, when I should have bought the "instant" oats.  Now he has to stand there for 5 minutes!  Gracious...what else does he have to do!!  After he gets all done, he sarcastically announces that he is now officially "rehabilitated".   It's been a while since I've seen this feisty spirit.

Hon making a silly face when I said, "Smile!"

We do all his vitals.  They are good except weight is down to 151.  When we took him into the ER on Feb 8 he was up to about 165.   But then he wasn't getting any tube feedings for almost a week.
His noon time Angel Cheryl reports by text that he's looking good, walking around, and talkative.  She administers the Metformin med and the ProSource protein treatment.
His 2 pm wellness check Angel Sister Joanna reports that he while he was behind schedule, he did do his banana flakes treatment.  He diligently prepared the solution and administered it all by himself with no assistance.  Again very talkative.
I forego a monthly club meeting so that I can get home and do meal and evening meds and bedtime routine.  By the time I get home, he's napping on the sofa.  But he quickly wakes up and is quite chatty. First thing he tells me is that we can't have Chicken Soup with chicken in it.  OK...please explain further.  Well the chicken clogs up his gastric tube and then he can't drain the tube.  So even though I ran the soup through the Robin-Helen blender, it wasn't pureed enough.  Through further interrogation, I sadly learn that, other than what he did with Cheryl at lunch and the one treatment of banana flakes, he had no other intake for the day.  So his day consisted of a little bit of oatmeal for breakfast, 1 treatment of protein (should be 3) and 1 treatment of banana flakes (should be 3).  He starts out good in the morning, but doesn't keep up with the med schedule through the day - almost like he runs out of steam by afternoon and then everything just falls by the wayside.  I talk him into trying Egg Beaters scrambled eggs for dinner.  I only make 1 egg's worth.  But after he tries them, he tells me they taste terrible and refuses to eat any more.  He says he hasn't eaten in so long, that nothing tastes good.  And I tell him the only remedy for that is to eat so his body gets reacquainted with food.  His response - "We're moving too fast with solid foods."   So that leaves us with only broth and popsicles, which isn't going to provide many calories.
Smokey has certainly been a good nursemaid.  He is definitely all daddy's boy now that Hon is back home, staying by his side for naps on the sofa and then curling up against Hon's legs all night long in bed.  Hon makes sure I know that Smokey doesn't leave his side.  It brings a lot of comfort and makes the long days more bearable.   

Day 105:  Wednesday, Feb 15
It was a day full of "no" answers and closed doors.  After many phone calls from Hospital Case Manager Carla and Insurance Nurse Cheryl (another C name!!), our request for rehab was officially declined.  As I suspected, PT wrote a glamorous report of how Hon can walk over 150 feet unassisted, he can transfer in and out of bed without assistance, he can stand at the sink and perform routine functions unassisted.  He is declared to be "mobility independent" and PT has officially released him from their in-patient care.  This wonderful summary was given to Spring Mill and while they would take him, they are concerned that insurance won't pay once they see the report.  Case Manager Carla can sense my frustration and has Occupational Therapist Laura call to talk me off the ledge.  Laura is actually very helpful and explains that the rehab option is given to patients who have a real mobility skill they need to accomplish.  Most of those types of patients can't walk or get out of bed without help.
But Hon can do all that.
She explains that Rehab PT really isn't what he needs.  He needs strengthening and conditioning - very focused therapy that skilled nursing places don't offer.   Even the PT he receives from Bayada Home Health Care isn't doing him any good because, again, that's geared for people who can't get around.  Hon has "activity intolerance" meaning his illness makes it difficult for him to get stronger - and no amount of PT can fix that.  She offers to write him a script for out-patient therapy which would mean someone has to take him to a therapy center several times a week.  And then he's exposed to the public - and germs - and colds, etc.   I can remember his Home Health Care PT saying that wouldn't be a good idea given Hon's weakened condition.  So he's in too good condition to qualify for rehab, but he can't open his pill bottles.  Where does that put us in the field of options?
The Insurance Nurse repeatedly asks if I'm going to exercise the right to appeal, but at this point we've already been told we don't stand a chance by 3 levels of decision makers.  What's the point?  I am so frustrated by this point that I can't even muster up any parting words for Case Manager Carla or Nurse Cheryl.   I just get all choked up because I don't know where else to turn.
Hon's Attending Doctor calls to see if I have any questions - well, yes...like how the procedure turned out yesterday?   He explains that they found a couple of non-bleeding ulcers in Hon's stomach and 1 in the duodenum.  But pretty much the answer is they don't know what caused the bleeding.  They are discharging him to home today at 5 pm.
I make arrangements with Radiology for copies of all of Hon's images/scans, etc. and very helpful Eric tells me I can go to Gibbons Room 3350 after 5 pm and pick them up.  By the time I leave work, crawl East on the Expressway, pick up the CD collection and get to Hon's corner suite, it's 6 pm.  They did help him to get a shower today, so he looks spiffy, but he's pissed off at just about everyone there.  He was curt to Case Manager Carla, annoyed that PT rules the world, and disappointed with the lack of communication with his floor nurses.  He's ready to get out of there.  As he puts it, "I've had it with this place and these people."
It's a very quiet ride home - me stewing about the fact that people like Hon just get lost in the system and the apparent lack of resources for our situation...Hon stewing about the same thing, I'm sure.
When we get home, he does ask for soup.  He eats the entire portion and for a moment I am transported back to a time when he easily finished his meals.  But an hour later, he throws up.  So much for the soup.  He goes to bed defeated; I go back to my nurse prep chores in frustrated tears and Smokey just curls up in his chair and puts his paw over his eyes.  We are all ready to put this day behind us.

Day 104:  Tuesday, Feb 14 - Valentine's Day
Driving through Center City tonight...I see couples all around me.  You can tell by the way they are dressed that they have been out for Valentine's Day.  Many are walking from popular restaurants like Ocean Prime (15th and Sansom).  They are holding hands.  They are all smiling and laughing.
And here we are - sitting in the hospital in a roomy corner "suite" across the hall from the supply closet and with a window view overlooking a building wall, trading text messages with family and friends and watching the Andy Griffith Show on TV.  No wine, no chocolate, no prime rib or lobster, no cheese cake...instead we have a tray of broth, apple juice and water ice.
Hon was moved from ICU at 4 am and put in a regular room.  Then around 10:30 am they took him down for another scope to try and find the source of his internal bleeding. When I got there I am actually impressed with how much larger this room is than others he's been in.  But he was already irritated with the room service in his "suite".  It took 25 minutes for the nurse to respond to his call for assistance so he could go to the bathroom.  And the ice water he asked for 2 hours before had still not arrived.  I help him change the sheets on his bed and go to get him the water.  His night shift nurse comes in and is clearly very busy.  He's hurrying to get Hon hooked back up to the tube feed so as not to get him off schedule, and therefore become easily befuddled with how Hon's stomach tube connects to the bag.  The ongoing problem with how to connect his G tube to the drain bag.  The Nurse indicates he, too, is going to have to find a bag that will fit.  Hon tells him what to use (because Hon's been down this road before), but the Nurse doesn't really hear him because he has other patients calling for him and he needs to move on.  Poor guy looked like he could really use an assistant!  He's very nice, and does take the time to ask Hon if anyone came to discuss discharge.  No...Hon never even saw a doctor after the procedure to find out what the findings were.
A doctor did call me back around 3 pm, right when I was in a meeting and couldn't answer my phone.  He just said he would try back and wanted to go over the discharge plan.  So I was hoping that they had talked to Hon.  But no luck.
Someone must have shook the trees this morning because I actually got a call from Case Manager Carla this morning.  First Cheryl, then Cynthia and now Carla.  Must be a pre-requisite that all Case Managers have names that start with the letter "C".   Carla is very nice and overly helpful.  She tells me that Hon's referral for Spring Mill has already been done and she just needed to check on the location for Shannondell.  The only obstacle is that Hon just left for his procedure, so his clinical chart went with him.  She also calls me around lunch to let me know Kenny's procedure is finished and that now they can send his clinicals over to the rehab facilities.  She even offers to find the doctor and have them call me.  She also called (during the same meeting) but doesn't leave a detailed message, so I'm not sure if they heard back from the doctor or not.
Hon seems rather quiet - he has actually been up all day and he's probably just tired.  He tells me that when he broached the subject of Rehab to his 2 physical therapists, they seemed shocked and ask why he's want to do that?   Problem is that PT has him up, walking around, so they've probably already reported that he doesn't need skilled care.  So we wait until tomorrow to find out what the final verdict is.  Like Hon says...he's either going to be headed home or headed to Spring Mill or Shannondell!  We've done all we can do at this point.  Now it's up to others what our fate will be.
From the song "Only Faith Can See" that I hear on the way home...
Life is full of troubles, we have our share of pain.
Some days it's just a struggle, to stay above the waves.
But God is near the broken, so lift your weary head.
He is so much stronger then what you're up against.

Some see a mountain, Faith sees the mountain moved.
Some see the waters, Faith can see us walking through.
So in this moment, just keep on trusting and believe,
There are some things only Faith can see!

Read more: The Erwins - Only Faith Can See Lyrics | MetroLyrics

Day 103:  Monday, Feb 13
I didn't go to see Hon today, but apparently he has gotten quite proficient with texting because several people reported they had brief conversations with him.  So silly that he never wanted his phone with him in the hospital before.  It's so much easier to stay in touch when he has it.  But he was always afraid someone would steal it.  Always a cautious cop, I guess.
The plan is to move him out of ICU today and then they want to do another scope procedure on Tuesday to try again to find the source of the bleeding.  Happy Valentine's Day, Hon - no chocolates - just anesthesia!
I spend another frustrating day trying to get through the red tape to get his medical records and his referrals to rehab.  We still haven't gotten his Discharge Summary from Feb 5 and, after 3 phone calls, I finally get transferred to Janene who explains that the Attending Physicians have up to 30 days to sign those, and that most of them take the full 30 days.  Even though we got Discharge Instructions, they can wait a month to sign the Summaries.  So the Medical Records Department
Patient Records is going to send an email to the Attending Physician and request signature.  So we wait.
I then have to call Radiology to follow up on my Feb 5th request for the CDs of the images from all his CT Scans, etc.  They tell me they won't prepare the CD until we have a discharge date.  Once we get a date, then the CD will be created and they can send it right up to his room.   So we wait.
I place another call to Case Manager Cheryl whom I spoke to on Friday and never heard back.  Left another message.  I called back through the main switchboard and get transferred to the Case Management Department who tells me his case manager is Cynthia.  Leave a message for her.  Never heard back from anyone.  In desperation, I reach out to friends from Kimberton whose daughter works at Jefferson.  Their daughter immediately returns my call and promises to get right on it in the morning.  She will identify his case manager and get them working on the 2 referrals for rehab.  She does warn me that getting into the rehab near Kimberton takes an Act of God.  But she has a contact there and will try to reach out to that person and hopefully make some headway with Hon's referral.  She's the glimmer of hope I've been needing. 
We received a call from University of Penn about getting an appointment for a second opinion.  That appointment is scheduled for March 1 unless Hon gets sprung sooner and we can get in earlier.  When I talked to Hon on Sunday, he was back peddling on the 2nd opinion idea.  So we'll have to revisit that and see what he wants to do. 


Day 102:  Sunday, Feb 12
Another trip with Joanna down the Schuylkill Expressway around 4:30 pm after a busy day of 2 meetings and 1 conference call.   A quick call to Medical ICU (MICU) confirms that Hon is still in ICU, but he did text me around 1 pm to tell me they did pull the breathing tube.  He indicates he is "ok, tired".

We arrive to see him in much better condition.  He seems very happy to see us even if we still look like Smurfs in our blue gowns and yellow face masks.  He is very talkative - scratchy voice - but the  Nurses are impressed with how good he sounds considering he had that breathing tube for 2 days.  He is now able to tell us all about the events of what got him there.
His 13th Floor Nurse found the blood discharging into his stomach bag.  They packed him up and moved him, not too efficiently or gracefully according to Hon, to another floor, but they couldn't really do anything for him, so that's when them made the call to put him in ICU.  At one point he said he had 3 IV poles and 9 people in his small ICU room.  And believe me, 3 people in that ICU room is cozy...9 must have looked like a city subway at 5 pm.  They had to paralyze him in order to put the breathing tube him.  Then the anesthesiologists came in and put him in twilight zone for the scope procedure.  He wasn't completely out because he says he could hear them talking - he just can't remember what they said.
According to Irish Nurse Elaine he's staying another night in ICU and most likely will be transferred back to regular floor on Monday.  I get to talk with her some more.  Turns out she is from Ireland and met her husband who was from Philadelphia while they were both in Sydney, Australia.  How ironic -  Hon's other sister lives in Australia.  Small world.
Hon likes his fancy ICU bed which is programmed to move him every 2 hours.  It automatically tilts him left or right or it'll move the head and feet up and down.  It is pretty cool.  Hon has been a model patient, she says.  His diarrhea is back and there's been a lot of clean up going on.  So once again I have to ask the nurse why they aren't giving him the Banatrol (banana flakes).  And once again, she doesn't know anything about it.  So I make the request.  Not sure I was really heard.  Or it is possible they will resume that treatment once he's out of ICU.  But it sure would reduce the diarrhea which you would think would make everyone happy!  They have finally put him back on the enteral feed.  He hasn't had any since we brought him into the ER on Wednesday.  He's pretty peppy for a guy who hasn't gotten any calories for 5 days!
I'm glad we went back down.  It was a relief to hear him talking on and on, looking at photos and even wondering if he was getting a dinner tray!  How sweet the sound ... "Am I getting to eat?"

Day 101:  Saturday, Feb 11
Hon's sister Joanna and I headed down to the City to see him today.  I thought it would be good for her to see the route to Jefferson, just in case she ever had to make the trip with him.  Plus it made the 1.5 hr ride more bearable to have someone to talk to - normally it's just me, myself and my Sirius radio!   Right before I head out the door, Hon sends me a text message, asking me to bring his throat spray.  Normally he uses this after he has one of the scope procedures.  But his text doesn't indicate that anything is out of sorts, so I pass it off as maybe his throat is sore from the coughing and vomiting.  After all, yesterday's report was that he was feeling better and doing laps around the halls.  So I text back that I'm headed out and that Joanna is coming, too.  I get his normal "ok" response.
Today must have been Free Entry day because for the first time Security didn't hand out badges or scan driver licenses - we got passed right through the gate!  Our spirits are high as we head to the 13th floor to his room.  I'm excited to meet the 13th floor nursing staff because so far they have been very pleasant and accommodating on the phone.  And I'm looking forward to seeing him feeling better.  And Joanna brought photos to share with him to lift his spirits.  But we are surprised to find his room completely empty - no bed and everything is cleaned and reset for a new occupant.  We check in at the Nurse's Station and Nurse Kathleen tells us that he was transferred to a different unit early this morning because he had some bloody discharge coming out of his G tube.  She calls around and finds that he's on the 5th floor in the other building across the street.  Joanna is getting a real tour now as we have to head back down and walk across the pedestrian bridge to the building where Hon was first admitted when this journey first began.
As we navigate the hallways, I reminisce about the time we came down for the appointment with Hon's Vascular doctor, came in through the wrong entrance and he had to walk so far down this same hall.  He didn't want a wheelchair, until we got halfway there and he started to peeter out and wished he had taken the ride!  We round the corner to the Gibbons East hall and I point out to Joanna that the double doors at the end of the hall go into the ICU where Hon went on Nov 4.  We continue to walk, following the signs for the rooms, and we're getting closer and closer to the ICU entrance...and I'm realizing that there are no other patient rooms down this hall....just the ICU.  The signs take us right to the ICU entrance and my heart sinks when I realize that's where he is...his new room is right where he was first admitted to ICU 100 days ago.
We come to Hon's door and I am shocked to see him hooked up to 2 IV poles and that he's on a breathing machine.  Nothing can prepare you for that.  I just kept saying over and over "He's never been on a breathing machine...even when he was first in ICU!".  What the hell happened since yesterday?  His stomach drainage bag shows the evidence that it has been filled with bloody fluid.  He can't talk because he has the breathing tube down his throat.  His lips are all chapped.  His right eye is droopy, swollen and red all around the lids.  He looks absolutely exhausted and defeated.  His ICU Nurse Elaine with the Irish accent comes to the door to find out who we are (since we don't have the security badges) and informs us that we have to suit up with the gowns and masks.  Standing in the hall getting into our garb, I ask her what has happened.  "Didn't anyone call you to tell you he was transferred?" she asks in her Irish lilt.  And as sweet as she is, I seriously want to flip out because, once again, no one called to tell me anything.  She instantly says she will go get the doctor and we head back in to see Hon.
He is not too with it, but he seems to be relieved to see us.  Communication now takes on a whole new strategy as I can only ask "yes" or "no" questions so that he can nod responses.  I'm still trying to take this all in because it was nothing I was expecting.  He indicates no pain.   The Resident and Fellow (who look to be all of 22 years old) show up at the door and ask us to come out into the hall so that they don't have to suit up.  Why should we be the only ones who get to rock the lovely blue plastic gowns and yellow face masks??  The first thing they both say is that they are very sorry that no one called me, but since Mr. Dobson was able to consent for himself, there was no reason to call.  They only call the family contact when they need consent (note to self - I really need to get that Power of Attorney signed!).
Apparently around 1:00 am the 13th Floor staff noticed that his G tube was discharging blood into his drainage bag.  His heart rate was high and his blood pressure was low.  They gave him 2 units of blood and then moved him to ICU because the GI team wanted to do a scope to see where the bleeding was occurring.  Since it's the weekend, it was quicker to do the scope at bedside than wait for Monday's surgical staff.  So he had to be intubated and therefore has to be placed in ICU because that's standard operating procedure.  They did the scope around 7 am and couldn't find anything, but they couldn't see all of the stomach because blood was blocking their view.   Since the procedure, blood work has shown that his hemoglobin level came up from 9 to 11.2 and was stable.  This is an indication that he is currently no longer bleeding internally, but they want to keep him on the breathing machine just in case they have to do the scope again.  They had to intubate him while he was conscious - which is not pleasant at all.  So they don't want to take the breathing tube out and possibly have to put it back in - repeating the agony.  We have to suit up because he has the flu and the gowns and mask are to protect us - not him.  Again, they are really sorry that no one contacted me.  It's little comfort and I just don't want to hear the apologies anymore.  I just think it would have been an appropriate thing to notify his emergency contact that there was a change in his condition.  ICU is a pretty big deal in my book.

Hon waving for the camera!

Hon tries to communicate through hand motions.  Sign language would be really helpful right now, but only one of us knows how to do that, and it's not Hon.  Joanna is quite good at interpreting his hand clues and figures out that Hon is actually asking how her Ken is doing.  Bless his heart...he's laying there all hooked up to machines and IVs and he's worried about someone else!  He also is able to communicate the times of when the events happened, how many IVs he's had, and that he has to pee.
I don't know what else to do except stare at him.  I ask the Nurse about his eye and she adjusts the breathing machine straps because they were pulling down on his eye.  After about 20 minutes his eye does start to look better.  I see his cell phone on the bed.  I ask him if he actually texted me while he was on the breathing machine?  He nods yes.  He's a trip!!  Of course a little more details like "Hey, I'm in ICU" or "They did a scope" would have been helpful!   He holds my hand - his skin feels very cool so I know he doesn't have a fever.  Then suddenly he reaches up and presses his hand against my cheek.  His eyes are a mirror to the despair he is feeling inside.  It breaks my heart and all I can muster to say is "You'll be ok, Hon.  You're gonna be ok." 
Just by fate, our consultant doctor texts me to see if I'm at the hospital.  I respond back with the latest events and he hustles right over.  He visits with Hon and talks with the ICU staff.  He gets more info and talks me off the ledge.  Hon's vital signs are good.  His latest CT scan shows that the pseudocyst is significantly diminished which is great news.  The internal bleeding is most likely a result of internal irritation from the gastric tube or necrotizing gunk from the pancreatitis.  So this latest development actually has nothing to do with his pancreatitis.  Hon's not in ICU because he's considered critical condition;  he is just in what Dr. Larry calls "protective custody" - he's in the safest place to have the procedures and be carefully watched.  If his hemoglobin level continues to stay stable, they will pull the breathing tube on Sunday and Hon will return to the regular floor.  So while I'm still reeling from this setback, Dr. Larry is not overly concerned and is very grateful that this all happened while Hon was already admitted, and especially that it didn't happen on Thursday when we were having the bad weather.  God worked everything out - even though none of us would have wished this on Hon, he was in the right place at the right time, and I do really appreciate the special attention he is now getting in ICU.  
Dr. Larry does chastise me that Hon should have gotten a flu shot.  They do ask Hon every time he's admitted, but he always declines.  His theory - the flu shot puts the flu into you and then you feel lousy.  But Dr. Larry points out that the flu can be debilitating to "healthy" people;  with all that Hon's got going on, it's even more serious.  So I guess Hon can add that to his annual checklist.  And oh, by the way, now Joanna and I should both get one because we've been exposed to his flu.  I'm such a great host...Joanna got more than she bargained for today!  But I was so grateful she was there.  This was a tough day and it was comforting to not have to go it alone.


Day 100:  Friday, Feb 10
Normally you celebrate when you reach a milestone of 100 of something - 100th birthday, 100th anniversary - but not in our case.  We are definitely not celebrating 100 days of pancreatitis.
My first phone call today was to the Case Manager.  I get Case Manager Cheryl who listens to my pleas.  I end my petition with, "So all you have to do is send his clinics over to Spring Mill this morning so they can determine if they have a bed available!"  Her response is not encouraging - "It's not that simple."  As I have learned over the past year with my dad, Physical Therapy (PT) rules the world.  They determine your limits and your capabilities.  They make the recommendations.  Despite the fact that we all can see that Hon is not progressing (in some incidences, regressing!), PT has to determine that he has "goals" that only a rehab setting will help him achieve.  He's got to have goals to pass the insurance criteria.  How about the goal is GETTER BETTER AND STRONGER!!  It is just mind boggling that this is such an ordeal.  People go to rehab for lesser cases than this.  I tell her that while Hon may be able to walk to the kitchen, open the fridge door, take out a soda or water bottle, he can't open them!  He has trouble filling the syringe to give himself his protein supplements and banana flakes because his hands shake so badly!  And if he tries to feed himself, by the time he gets the spoon to his mouth, whatever is on the spoon is gone because he can't keep his hand still.  Case Manager Cheryl says she will contact Hon's team and "pass along my wishes".  I did not hear any more from her today.  And it's Friday - again.  So nothing will happen until Monday.
I checked in with Hon's nurse - so far I'm very happy with his 13th Floor team.  They have been very pleasant and responsive.  When I call, they don't put me on hold for 29 minutes, and they actually have reports to tell me.  Maybe 13 is our lucky number!  Today's report:  The nurse just finished taking a walk with Hon.  He says he's feeling a little better.  His blood work shows that he has the flu.  Gee...do you think we might have picked up the flu from sitting in the cesspool of germs in the ER last week??  This probably explains the cough, the mucus he brings up, the fever, and the decreased oxygen level.  So they are giving him Tamiflu, more fluids, and nothing by mouth. He's not even on his tube feed yet.  Another walk is scheduled for later this evening.
His GI team was contemplating going in and checking his stents, but now that plan is canceled because of the flu determination.
So the clock is ticking...which will happen first?  A determination by PT that he can go to rehab or they discharge him?  Tick...tick..tick.

Day 99:  Thursday, Feb 9 - First Snow of 2017
Some time between 4 am and 9 am (when I finally woke up) - it snowed about 4 inches at our house.  By the time I reach consciousness, the sun is out, accentuating the brilliant white of the snow.  I actually get a text message from Hon; he had his cell phone in his tshirt pocket yesterday and I forgot to bring it home.  So at least I can communicate directly with him.  His first question is asking about how much snow we have.  I know he's laying there thinking about the fact that he should be out plowing our driveway plus several driveways for family members.  But thanks to Angel Rich, Hon's friend, our driveway is already plowed.
I call the Nurses Station around 3:00 pm to get an update.  He's actually on the 13th floor this time, which is bit of fresh air because I think the 10th (normally where the GI patients go) floor is getting bored with Hon.  The nurse on the 13th floor exclaims how nice Hon is...well yes, I'm rather fond of him, too!  So he's apparently not feeling too badly because he's charming his caretakers.  But Nurse Kelly does say that he's got a fever - 102.2.  Way to go Hon - you've redeemed our integrity - can someone run down and let the Emergency department know that we weren't making up his illness last night??  Side note - I looked up my notes from our ER visit last time - his temperature reading was exactly 98.3 last time, too.  I'm starting to think there's a conspiracy theory with the ER thermometers.
Anyway, Nurse Kelly is waiting for the doctor team to order the lab work that she's to have done.  Poor guy isn't going to have any blood left.  His hands and arms are so bruised and scabbed from all the IV and blood draw sites.
Hon is very brief on his text messages.  Just a lot of  "yep" and "ok" responses.  So I'm thinking he's not feeling too peppy.  I also request that his case manager call me.  I suddenly have a realization that it probably won't be Miss Personality Mary because Hon is not on the GI floor this time.  They tell me that it will be case manager Carla.  But she doesn't call back, so she must have same banker hours as Mary.   Now we're back in the same situation - it'll be Friday tomorrow, and we'll be down to the wire again trying to get everything sent to Spring Mill for consideration before another Saturday or Sunday discharge looms on the horizon.  It'll have to be my first phone call on Friday morning.   Hon actually asked me yesterday what I had heard from Spring Mill.  I had to explain that we lost the opportunity when they discharged him on Sunday.  I don't think he understood the timing factor.  Then on the way down to ER, he asked, "How long would I stay at Spring Mill?"  When I said probably 2 weeks, he said, "Then what?"  I guess he thought I was shipping him somewhere else.  But I reassure that it would just be 2 weeks and then he's be stronger to come home, but that it would give him the opportunity to get 24/7 care as well as daily physical therapy.   He's still agreeable.  Now we just have to work the system at the hospital.  I tell him if they come in and only offer home health care again (the other case managers never gave him options), he's to ask about Spring Mill.  Maybe if we double-team them, we'll get somewhere.  The clock starts ticking.  Again.

Day 98:  Wednesday, Feb 8
Hon threw up almost every 2 hours overnight.  We do our normal morning routine and see that Hon has a temp of 99.5 (normally he's around 97) and his oxygen level is down to 94.  I ask him to check his temp at lunch because of the vomiting.
Cheryl's lunch time report is a temp of 102.2 or 102.4, depending on the ear!  So begins the litany of phone calls to Home Health Care, Jefferson GI team and consultant doctor.  It was unanimous that Hon needs to go back to Jefferson ER.  I can't believe we have to do this.
My head tells me to follow the advice of the medical experts.  But my heart is saying, "what if this is the window of opportunity to break the cycle and go to Paoli and subsequently get into the Main Line Health system - just like Mrs. Dinniman?"    My Niece Nurse Jess works at Paoli and she thinks it might be worth a try.  But Hon is doing so poorly now at home - vomiting every hour and the high temperature.  Do we mess with doing a drastic change with the siege his body is currently under?   Paoli will only end up transferring him to the city because they will not be equipped to handle his case.  I struggle with the decision.  I've always been told I think too much with my heart, so I decide to follow the medical experts and head home to pick up Hon to make the trek back to Jefferson.  His GI team has already notified ER that we are headed in.

Traffic on the Schuylkill Expressway is gridlock.  It takes us 2 hours to get to the hospital.  Maybe everyone was headed to the store to buy milk, eggs and bread as a result of the pending snowstorm they are forecasting.  And Hon is starting to talk goofy again, so I'm thinking we're experiencing low potassium levels again.  Hon checks himself in and receives his complimentary vomit bag.  We enter the triage area, only to be surprised with the fact that Hon's temperature is now registering only 98.3.  We look at each other in disbelief.  How does this happen that he runs a fever and vomits at home, but as soon as we get to the hospital, his vitals make us look like liars?
We are ushered to the ER waiting room which is full of people wearing masks, in wheelchairs, sleeping or coughing.  Lovely.  If Hon doesn't have an illness already, he's going to have one after spending time in this cesspool of germs.
I've often heard of these new interactive play performances where the audience is actually part of the cast.  If I hadn't known better I could have sworn that's what was happening to us.   We had Doris.  Doris came in with a bad abrasion on her toe.  She is extremely loud and vocal.  She spends time limping around the ER complaining about the perceived injustice because they told her they called her name, but she didn't hear it, so now she's been put to the bottom of the list to be seen.  She calls friends on her cell phone and talks so loud that everyone in Philadelphia probably heard her phone conversations.  We also have Swollen Eye Man - he and his wife come in wearing face masks to protect themselves from the cesspool of germs.  His eye is so swollen he can hardly wear his glasses.  His wife had brought a wheeling suitcase - they look like they are waiting at the airport to catch a flight!  Then we have Asian mother and daughter.  Mother is a limp doll sleeping on daughter's shoulder, hooked up to IV fluids in the waiting room.  Then we have the Preppy Couple.  She is waltzing around the ER with her preppy plaid cape and mingling with the staff, acting like she should be receiving special treatment.  Next is Big Man.  Huge size of a man sitting in a wheelchair, tears running down his face, claiming he's having a heart attack and no one in the ER will pay any attention to him.  They aren't.  We also have another mother and daughter.  Mother is quite pleasant and laughs at all of Hon's dry sense of humor comments (in between vomiting).  She doesn't even look sick and we wonder why she's there.  She is also quite amused with Doris - we all are.   Behind the curtain is Invisible Jock.  A guy that was laying in one of the ER corridors who obviously messed up his knee or ankle. We don't see him, but boy do we hear him!  He is writhing in pain and every time they try to pull or twist the injured part back into position he lets us know how much it hurts.  Finally we have at least 3 people, including Hon, who are puking regularly into their souvenir vomit bags.   I spend most of my time with my eyes closed, praying that we soon hear "DOBSON?" and can escape all of this.
The cast gets smaller when Asian mother and daughter opt out of the play early.  Her IV fluids have helped and they no longer want to see an ER doctor.  Big Man gives up in disgust when the nurse won't take out his IV connector without filling out paperwork, and just leaves.  Not sure how he's managing to get that IV out of his hand.  They finally call Doris' name and the whole room pipes up to make sure she heard her name this time.  That gets her out of our hair and onto an exam room.  Invisible Jock finally gets relief and leaves.  Preppy couple also gets called for an exam room as does Swollen Eye Man.  But poor Pleasant Mother is still sitting there - she came in after we did, so she's got more waiting ahead.

Timeline:  Arrive 6:30 pm.  Triage 7:15 pm.  Xrays 8:00 pm.  IV tubing put in 9:15 pm.  Actual IV fluids administered 10:15 pm (a new Fred).  Vital signs re-checked 11:30 am.  (Hon's temp is now 99.5 again).  Finally in an ER exam room 12:31 am.  See the ER attending doctor 2:00 am.
We are actually placed in an exam room on the other side of the crazy ER.  It is much quieter and more calm.  We have a nice intern named Diana and a tiny little nurse named Lisa.  Everyone is very attentive and we feel calm now.  They do the normal blood work, EKG, and another xray of his chest because of the persistent cough and the rattling they hear in his lungs.  And guess who's in the exam room next to us?  If you guessed Doris, then you win a prize.  And she was still in her glory - yelling "HELP!  HELP!  I NEED HELP! about every 15 minutes.  I pull my visitor chair up alongside Hon's bed and lay my head down.  I actually am asleep when ER doctor finally comes in.

The bottom line:  Hon's blood work shows no real problems.  His electrolytes are actually pretty good.  No problems with his pancreatic enzymes.  Right now there is really  no indication that Hon is sick except for what we report - vomiting, bad headache and a very high temperature about 12 hours ago.  But the very nice ER doctor (who was at Penn for 8 years and just transferred to Jefferson 6 months ago) actually listens to us and makes a motion that he needs to stay overnight because he obviously is having the same symptoms as last week and the GI team needs to see him.  I second the motion and Hon votes yes.  It was a very long wait to get the end result we wanted.   Dr ER says that Jefferson is the best at figuring out complicated pancreatitis cases.  Somehow Hon and I are not reassured by his optimism.
I head home, trying to beat the dropping temps and possible ice on the roadways.  I make it home by 4 am, just as the car thermometer drops down to 33.  So very thankful for my warm bed and the chance to finally sleep.
Lesson of the day:  follow your heart.

Day 97:  Tuesday, Feb 7
Another good start of the day.   Hon is in a great mood - he evens makes the bed!  We're out in the family room and done with all our morning med routines by 7:15 am.  I leave Hon doing his banana flakes treatment and another schedule to keep today.  Cheryl is scheduled to be by around lunch to assist with meds, and sister Joanna will be by after work to check on Hon.   I hope to go to a Board meeting in King of Prussia considering that Hon is really starting to perk up and will have people checking on his throughout the day.
Coworker Wendy joins the Angel Squad when she takes the time to make Hon a protein smoothie with spinach, honey, mango and bananas.  It's all mixed up and waiting in the freezer to me to take home and share with Hon.
The consultant doctor calls to say he has found an endoscopist who is willing to see Hon.  Dr. Jaffe, associated with Penn in Radnor, is up to speed on Hon's medical journey and will meet with us.  But when I call to make the appointment, Dr. Jaffe's office scheduler informs me that they are making appointments for May and June.  Good grief, this guy must be Superman to have an office visit backlog like that!  I send the bad news back to the medical consultant.  Within a few hours he has me on a conference call with Dr. Jaffe's office and they may be able to double-book us in before the Feb 15th Jefferson doctor appointment.  Double-book - isn't that what all doctors do?  You know, when they tell you that you have an appointment at 9 am, and 3 other people in the meeting room have the same appointment time??
Cheryl's noon time check in is very encouraging.  Hon was very talkative, had cereal for breakfast and was working on a fruit cup of peaches for lunch.  He tells Cheryl is feeling good.
The consultant doctor calls back in the afternoon.  Bad news.  Dr. Jaffe is not our guy.  He doesn't perform the necrotizing endoscopy (ERCP) like Hon has been getting at Jefferson.  Dr. Jaffe explains that the procedure is very risky and that no satellite hospital or procedure center will do it - everything gets elevated to Jefferson or Penn.  But Dr. Jaffe isn't ditching us completely.  He's willing to survey his Penn colleagues to find out who is the best GI person for us to talk to.  So I need to fax him all of Hon's discharge and procedure summaries so that he can pass them along to a doctor at Penn.  Now we only have 5 business days to try and get this second opinion before the Feb 15 Jefferson doctor office visit.
Pilot friend Bonnie forwards me the article so many others have told us about - the story of Senator Dinniman's wife and her journey with pancreatitis.  His wife was treated through the Main Line Health system including Paoli and Lankenau Hospitals.  It is unbelievable when reading her story - almost a mirror image of Hon's journey - from the sudden onset of the pancreatitis, the development of the pseudocyst, the ERCP procedures with drain stents...but the difference?  Mrs. Dinniman went from hospital to rehab to help her build her strength and gain back weight and muscle.  Us?  We go from hospital to home, and we're expected to build Hon back up ourselves.  Big difference.  I'm trying, but I'm no rehab center.  This stark difference is very evident and I'm left with the feeling that Hon got cheated out of opportunities to rehabilitate.
I leave work late because I got backed up with a project and a late afternoon meeting.  So now I'm going to be late for my Board meeting in  King of Prussia.  Consultant doctor calls again to see if I faxed everything to Dr. Jaffe - unfortunately I didn't have time because I was busy at work.  He presses me to make sure I do this right away, and that I also need to put everything in date chronological order.  I''m starting to get overwhelmed and I take it out on the GPS lady in the car by yelling at her when she fails to dial a phone number that I need to call to let the Pilot ladies know I'm running late.  It felt good to yell at someone - even if it was the anonymous GPS lady.
Hon's sister sends a message around 6:30 pm that all is well at home.  Hon was in a good mood but concedes that he will probably be in bed by the time I get home.  That's ok...he would have done that if he was feeling normal!

But towards the end of the Board Meeting I get surprising information that Hon was vomiting and had diarrhea this afternoon.  He obviously hid it pretty well from all his "checkers".  By the time I get home, he is in bed, no tube feed hooked up, and the familiar bucket by his bedside.  He's vomited 4 times since 2:00 pm.  And had a really bad episode of diarrhea.  It all started after he ate the peaches.  It must be a fruit thing...first time he had these vomiting symptoms was after he ate strawberries.  Now he's having a reaction after peaches.   He doesn't want anything - no fluids, no tube feed and certainly no treatments.  So I spend the rest of the night doing laundry, cleaning carpets, sanitizing bathrooms and feeling guilty for having gone to the meeting.  "What are you going to do - run home every time I sneeze??" he chastises me.  No, but I don't want him to have to deal with vomiting and diarrhea all by himself either.  His cough is getting worse and only triggers the vomiting.  The medical consultant says that there is an inflammation near the pancreas and the duodenum (connects stomach to intestine) and that's what is causing the vomiting.  I still think there just has to be something wrong inside - some sort of blockage with those tubes.  Or we are completely way off base with what he's eating.  But right now fruit doesn't seem to working, and now we have more restrictions on what he can eat.   So we do what the hospital did when we took him in last week with the vomiting - cut back on all intake - tube feed, fluids - let the pancreas rest.  Let's just hope the fact that he's emptied his stomach drain twice today, and now he is throwing up, hasn't messed with his electrolytes again.
   
Day 96:  Monday, Feb 6
It's another maniac Monday.  But I can tell we're shaving some minutes off our morning routine.  Hon weighs in at 165 and his vitals are good.  He's the healthiest sick person I know.  I leave him with his med/treatment schedule, and the knowledge that his Home Health Care Nurse is coming today to open up his case - again.
I play the audio of that resident who talked to us on Saturday night to several co-workers.  They are astounded as they listen to the youngster Resident fumble his way through the update..  My boss influences me to call the GI team and ask why the resident thought his problems were from alcoholic pancreatitis.  When I call the Nurse Practitioner, she explains that we have to schedule another CT scan by March 1.   But our next physician appointment is Tues Feb 15.  When I ask her what they're going to do during the office visit without images, she explains that since he just had one, having another one in such a small amount of time would really not produce any new results.  She also confirms that she has looked through his entire record and sees no mention of alcoholic pancreatitis.  The resident must have mispoke.  Yes, he did.
His noon time visit from Cheryl is encouraging.  He's very talkative and has been trying to eat small snacks - Hon had Cheerios for breakfast and the rest of his chicken noodle soup for lunch.
The consultant doctor calls.  His thinking is that while "Dr. Serious" may be technically proficient, his communication skills and bedside manner leave a lot to be desired.  He also thinks that all this running back and forth to Jefferson to have the endoscopy done is ridiculous.  He wants to find a competent endoscopist closer to home and have that doctor meet with us.
By the time I get home, he's actually sitting up in his recliner, watching TV.  I talk him into trying a tiny pancake, which I made from scratch.  Still not sure what to feed him.  There are only so many liquid foods to choose from, but they did say he could eat bread, fruits and vegetables.  He eats about 3/4 of a 3" pancake and then heads to bed.  In the middle of the night I am awakened by his coughing.  It comes on him suddenly and usually results in bringing up phlegm.  When he lays back down, I notice that his breathing is very heavy.  Not sure what that means, but I don't have a good feeling.

Day 95:  Sunday, Feb 5 - Super Bowl Sunday
Hung out at home all day, in my jammies, with Smokey.  Got lots of computer work done, despite the fact that Smokey insists on walking all over the keyboard!
At 2:30 pm my cell phone rings and it's Hon wanting to know where I am.  Why?  Because the hospital discharged him.  My heart sinks.  The window of opportunity to get the case manager to send the request for Skilled Nursing at Spring Mill just closed.   No one from the hospital called to say he'd been discharged, so after 4 hours, Hon started to question.  They thought he had called me.  Hmmm...didn't know it was the patient's responsibility to do that part.
Hon is actually quite good.  He greets me with the exclamation that they let him take a shower today.  There is a 3M adhesive that they put over his G-J tube to prevent moisture from getting to his tube sites.  He hasn't been able to take a shower since Dec 8 when he had the tubes put in.  For Hon, this was the best treat anyone could have given him.  Then after the shower story, he gets busy getting ready to go home.  He's out of bed, dressing himself, complaining that his change of clothes are cold (I had his go home bag in my car for several days), walking around the room picking up souvenirs to take home (tape, containers, syringes, bed pads, & skin cream.  In other words, if it's out on the counter or windowsill, it's fair game!
I'm busy filling out the release form so that we can get his discharge summary for our mission to possibly go elsewhere to get a 2nd opinion.  Hon's now walking around the hall, talking to the nurses and telling them how wonderful they are!  The nurse explains if the medical records are sent to my home, it'll cost us $1 a page;  if we have it sent to a primary care physician, there's no cost.  We figure after 95 days of Hon's medical journey, there's going to be a lot of pages. So we elect to have everything sent to the medical consultant.
When we get home, we're both exhausted.  He falls asleep immediately on the sofa; I snooze in his recliner.  Later he wakes up and is in a good mood.  He's even willing to try some chicken noodle soup which I run through the Robin-Helen Blender to puree.  Then it's Banana Flakes for dessert and Hon goes to bed.  I am encouraged by his good mood, seeing him walk with more purpose, and him eating.  Smokey is just happy that his daddy is home.  Smokey doesn't leave Hon's side all night.
I feel like Tom Brady of the Super Bowl winning New England Patriots...a team that made history tonight coming back from a 3 touchdown deficit to win the game in overtime.  He didn't give up, despite the tremendous odds, he just kept going, slowing advancing his team.  The Lord declares, "For I know the plans I have for you...plans to prosper you and not to harm you...plans to give you a hope and a future."   So I'm not giving up.  I just have to put my trust in the Lord's plan, keep us in the game, and wait for our "coach" to guide us towards that end zone.

Day 94:  Saturday, Feb 4
Not knowing what the Jefferson plan was today, I went ahead and attended a conference planning meeting in Wyomissing this morning.  It was nice to spend time with fair friends Kevin and Shirley and hotel planner Carolyn.  We got a lot accomplished and it felt good to be involved with a team who understand the concept of planning and communication.  Perhaps Hotel Carolyn would be interested in training the folks at Jefferson.  Kevin and Shirley surprised me with supplies of Gatorade and Ginger Ale for Hon which we are very grateful for - Hon really goes through the stuff and I have a hard time keeping up with the supply!
Then it was back home for lunch because I remembered that I neglected to eat breakfast.  Neighbor friend Mary Lou surprised me with a visit and a homemade Quiche Lorraine - one of my favorites.  This will sustain me over many days for breakfast or lunch.  It looks so good!
Finally back down the Schuylkill Expressway to Center City around 3 pm, thinking it would be easy-breezy on a Saturday afternoon.  Another surprise - NOT!  Bumper to bumper to the point of grid lock from the 676-76 split into the City.  Craziness as lanes and intersections were blocked, cars trying to cut over from lane to lane, and an emergency police procession with the SWAT truck trying to maneuver their way through the entire mess.  Not sure exactly what was causing all the commotion, perhaps the Auto Show downtown?  But it was a 2 hour commute.  Too bad there wasn't a second bed in Hon's room - I needed a nap after that ride!
Hon was obviously very happy to see me.  I think he is lonely and bored.  The room TV doesn't work and they don't even have the room phone plugged in.  No wonder he didn't answer me on Friday when I tried to call.  The weekend staff is reduced, so nurses/techs don't come in as often.  Of course he said he waited 35 minutes on Friday for someone to respond to his call for help to go to the bathroom yesterday, and then the tech came in with a real attitude, so the week day shift didn't win any points either.
Hon's Nurses today were all men.  Day Nurse Roman was having a hard time with the Vivonex tube feed.  Hon had to teach Roman how to mix it - good job, Hon!   And Hon's diarrhea is back.  This is disappointing since we had that all under control at home.  When I ask Roman if they were giving Hon the Banatrol, he doesn't seem to know what that was.  I explained that it would be beneficial to him and Hon to look it up because it was on Hon's med list.
Hon tells me about the doctor visits on Thurs and Fri.  Hon's new strategy is that when the doctor comes and stands at the doorway, Hon stays on his side, facing the window.  He doesn't respond to the doctor's calls which makes the doctor enter the room and come around to Hon's bedside.  When Hon complains about how long this is taking, the doctor responds that his is a complicated case, and that it could take several months to get it all figured out.  The next day Hon asks what the game plan is, to which the doctor responds that they are going back over everything, looking at everything and deciding what they are going to do.  Hon now has an office appointment with another doctor in the team (nobody told me - nobody calls me!)  "So in other words now I'm a guinea pig!" Hon says.  To which the doctor doesn't really have anything to say.  Hon tells him he feels like a hockey puck being banged around from end to end.  One person tells you one thing.  Another person tells you something else.  They don't even have their story together!  
Finally today we get to talk to one of the residents.  This is exactly how the conversation went (I taped it...sister-in-law Nadine would be proud of me!)
Resident:  Hi, my name is Chris, I'm one of the night float team.  I was told you wanted an update on something?
Me:  YES! Are you the person to do that?!?!
Resident:  I was told a little a bit about you.  I'm not your main team.  I think the main team could probably give you better updates.  But did you have questions specifically that I could try and answer for you?
Me:  Well, do you know what the plan is going forward?  That would be a good place to start."
Resident:  I was told that you had this G tube placed and they are just looking for a missing attachment, and once they get that on the road and you are tolerating your diet - I know you've been having difficulty with this obstruction - I think they can send you home after that.
Me:  Have they figured out why he was vomiting so much on Monday?  That's why we came."
Resident:  Absolutely.  Correct me if I'm wrong. You have a history of alcoholic pancreatitis?
Me:  NO
Hon:  Where'd you get that one?  Is having 1 beer a month considered alcoholic?
Resident:  I wouldn't think so, that's just what I was told.
Me:  No - no.
Resident:  Or at least chronic pancreatitis?
Me:  Acute.
Resident:  Maybe worsened by some alcohol?  Or no alcohol?
Me:  No alcohol.  They actually think it was caused by medications he was on.  They stopped several medications.
Resident:  Well, not knowing too much about you, the chronic pancreatitis might have worsened and the inflammation could have caused the obstruction, at least from what I read.  The treatment and management that we usually do in the hospital is more conservative...we slow down the tube feed rate, we take a look at how much you're throwing up and how well you tolerate food.  In terms of the pancreatitis, it's something that just needs a bit of time.  I wish I could tell you more about the plan, but the Day Team will be here tomorrow.  We just had a change of shift and was just assigned you by my Day Team about 5  minutes ago.
Me:  (Laughing) We missed the Day Team by 5 minutes!

He apologizes for not having a better grasp on this situation.  Well, he did just get handed the notes 5 minutes ago.  I ask for the Banatrol.  Resident Chris says that's a reasonable request and he will order it and inform the Day Team. When I ask about discharge plan, he reads the summary off his notes:  "Patient is missing a G tube venting attachment that we need to get before he can be discharged.  The GI Team and Nursing are looking into it."

Hon's muscles are back to shaking badly.  He can't open any of his food tray items like the soda can or the ice tea box.  Pouring the drinks into the cup of ice is difficult and often messy.  He gets very frustrated.  And trying to eat the soup they give him requires a straw because he can't lift the bowl or use a spoon without spilling it.
Case Manager Mary did leave the list of the skilled nursing facilities like she promised.  There is also a paper on his tray table with orders to get a CT scan by March 1.  No explanation.  They didn't talk to Hon about it.  In fact the doctor's business card clipped to the paper has "Kennedy Dobson" written on it.  Glad they know the name of the patient.
We talk about the idea of going to Spring Mill and Hon says he has no problem going.  I am relieved to hear.  Now we just play the waiting game - getting it all arranged with Case Manager Mary before they discharge him.

The Night Shift is Nurse Frank and Tech Will.  Frank has been there 5 years.  Previously he worked in the St Luke Medical system up in Lehigh.  He sings the praises of Jefferson - how the compensation is so much more than any suburban hospital.  And that the hospital has so much money and so many resources.  Says the hospital has been good to him.  He does all of Hon's vitals - blood pressure is high.  He also shows us some tips for better managing the wound dressings.  He will give Hon his Banatrol at midnight and at 6 am.
So I cover up a shivering Hon, turn the room thermometer up to 78, outten the lights and head back home.  I'm sure tomorrow will be another interesting Chapter in the story.   Can't wait to hear what the Day Team thinks Hon has - maybe Kennedy Dobson will develop a new diagnosis overnight!
My last surprise for the night - I have been wishing for Sicilian pizza all week.  But it was always too late at night coming home from Jeff to get any.  So tonight I finally make it to the Bella Pizzeria in my township before closing time.  They have Sicilian!  I order 2 slices - they surprise me by putting 3 slices in the box. Apparently it was the end of the night and they didn't want to throw pizza away.  What a treat!

Day 93:  Friday, Feb 3
For all the praises I hear about Jefferson being the best place, they haven't scored any points for communication skills.  The Day Nurse who last night's Nurse said would call me, never did.  I tried around noon time and was put on hold.  After 29 minutes (I just put it on speaker phone because I was getting a crick in my neck from holding the receiver to my ear!) I hung up and called back.  Again they said the Nurse was on break, took my number and said she would call me back.
By 7 pm, hadn't heard a thing.  Called back and was told the Nurse was with another patient and would call me back.  By 8:30 pm, nothing, so another call.  This time I spoke to his Nurse who said he hadn't called me back because he had paged the Doctor to get an update, and the Nurse hadn't heard back from the doctor.  I know how he feels.  The Nurse didn't have much to report other than Hon was getting a meal tray (liquid diet only) and that he just asked for a Coke.  Strange because Hon doesn't drink soda.  When I asked if he was actually eating what is on the tray, the Nurse really didn't know.  He just said that the Team was still trying to figure out why he experienced the vomiting.  He takes my number and says he'll have the Team call me.
But the most interesting interaction today with the hospital was with the Case Manager - another elusive person whom I have never met.  When Hon's Home Health Care liaison called to let me know she was back on the case and setting him back up for Home Health Care, I asked about possible discharge to Skilled Nursing so that Hon could receive all his feedings and treatments, and someone would be there 24/7 to help and watch him.  A situation we do not have in our home.  Home Health Care lady put me in touch with Hon's Case Manager Mary.  I explained my story to Mary - about how with the 1/18/17 discharge, the GI Team informed me that I should have made my wishes known about discharge to Skilled Nursing "earlier".  So now I'm asking earlier.  Mary tells me the procedure, and seems rather annoyed that I'm telling her my idea on a Friday at 4 pm.  The Clinical staff needs to send a Referral to the facility, they review to see if they have an appropriate bed and can accommodate his medical needs, if they approve, then it elevates to the Insurance company to approve.   This takes days and Mary says I should have asked earlier so that she could have worked on this all week.  So basically a person is supposed to announce their wishes upon the time the patient is first admitted, even if you have no earthly idea how long the patient will be in the hospital because no one calls you back.  Mary does a quick search of facilities and the ones she reads seem far away.  She will give Hon the list so he can choose.  I ask about Spring Mill/Powerback which is literally 15 min from our home.  She doesn't see that one, and that she only picked the "5 Star" ones.  Well, from past experience, Powerback is 5 Star.  Mary needs to get a better list.
The cards are stacked against me.  It's 4 pm on a Friday.  Mary's leaving soon.  The Case Management staff is sparse on the weekend.  The insurance company won't be open on the weekend, and Powerback won't be able to review until Monday.  By then Hon could already be discharged.   I quick call Powerback and speak to Michelle who confirms that they take my insur, they take Medicare and oh yes, everyone at Jefferson is very familiar with them.  Apparently not everyone.  Michelle...this is Mary.  Mary...this is Michelle.
I call Mary back and now she is really annoyed because it's 4:45 pm.  I give her my research on Powerback and she basically says if Hon is still there on Monday, she'll start the process.   Again, she wishes someone had told her "earlier".  And I tell her I wish someone had told me the process "earlier", too.
Of course, this whole plan hinges on Hon's approval because as Mary tells me in her annoyed voice, he's very capable of making his own decisions, and when she asked him, he was ok with Home Health Care.  Of course he was...he didn't know there were options.
So I didn't go down to the City tonight.  All my sources warned me about the crazy traffic, and I could fight all that and then Hon tells me to go home.
Oh, and the Team never called me back last night.   I guess I should have asked "earlier". 

Day 92:  Thursday, Feb 2 - Groundhog's Dayy
We can relate to the Bill Murray movie.  Waking up every morning and the day just unfolds in the exact same way.  We feel like strangers in our own lives.  We go through the motions, but no matter how we try to change the outcome, we just seem stuck in a loop.  I didn't get to see or talk to Hon today.  I had a work trip to Maryland and didn't get back until after 5 pm.  Hon had told me last night he wanted me to stay away from the city tonight.  Besides being tired, there were 2 Philly teams playing tonight which would just make traffic a nightmare.  So I called the Nurses' station around 5:30 pm.  The Nurse was busy with another patient and they said they'd have her call me.  After 7 pm, no call and now it's shift change, so lost the opportunity to talk to that nurse.  I tried back around 9 pm.  Evening shift nurse was also busy and they asked me to call back.  Finally 3rd time is the charm and I get to talk to Nurse Frank who tells me that Hon is watching TV and doing well.  No reported vomiting and they were allowing him to drink water and ginger ale. They have not given him any pills by mouth, though.  The Nurse said that Hon is getting supportive care vs. having any procedures done today.  He is going to leave my phone number with the day nurse and ask her to call me tomorrow.  Hope it's not the same nurse that didn't call me back earlier today.

Day 91:  Wednesday, Feb 1

What a surprise this morning to find out that Hon was still in the ER.  After I left at 1 AM, I assumed he would be moved to a regular floor within a few hours.  No.  He is still being held in the ER because there are no beds available.  The ER is also bursting at the seams with patients lying on beds in the aisles around the Nurses' Stations.  Hon should be very grateful that he was one of the lucky ones who actually got an examining room with a draw curtain.  And like he says, at least he doesn't have to worry about a roommate.  But the noise is so distracting.  With patients lying in any open space throughout the ER department, there is chatter everywhere!  We're not sure if some of the patients are homeless people who frequent the ER often or what, but everybody seems to know everybody.  The lady laying outside of Hon's exam room tonight had a little cluster of people, including one of the ER nurses, sitting around chatting and laughing.  It's almost like an ER cocktail party, with everyone wearing the same outfit!  Hon's nurse Allie comes in to apologize that he doesn't have a bed yet, but we thank her because we have seen that the level of care in the ER has actually been better than the regular floor.  Her face broke out in a smile - you could tell she enjoyed hearing some acknowledgment and appreciation during a day that obviously had been very tiresome for the ER staff.
Hon vomited 3 times today - once in front of the ER doctor.  Visuals are always good for getting your point across.  Doctor immediately alerted the GI team.  Seems that the vomiting came right after Hon took Tylenol with water by mouth.  He asked for liquid Tylenol through his J tube.  They brought Tylenol tablets.  So he took it, and then it came right back up.  Once all that fluid got out of his stomach, he stopped vomiting.  So he isn't able to tolerate anything by mouth.  And that is a setback because he was doing really well at home with drinking 3-4 bottles of water or Gatorade a day.
He is amused to tell me that the GI team decided to open up his gastric (stomach) drain.   So he has a drain bag again.  Now if you're following our story, you are probably saying, "But I thought the draining of the stomach is what caused his electrolytes to drop a few weeks ago and he ended up in the hospital for a week with low potassium and low sodium chloride??"  And you would be right!  But the GI team decided that they'd leave it open for a while to give Hon some relief.  The problem is that Hon's current G tube is not the original one that Jefferson put in.  It's the one that the local hospital put in when Hon's tube came out when he fell on Jan 10.  Now the new tube doesn't fit into the valve of the drain bag.  Apparently trying to figure out how to hook up Hon's tube to the bag was an arts and crafts project today!
Allie comes back with student nurse Nicole who administers Hon's Protonix (stomach/acid reflux) med through his IV.  Allie is a good teacher and Nicole is a good student.  We find out that she has a Bachelor's Degree in another area, and is now on an accelerated program to get her Bachelor of Nursing degree.
We watch the news (thank goodness the TV reception is better in the ER - it sucks on the other floors) and chit chat.   We also talk about signing Powers of Attorney for each of us, and about possibly going to another Phila hospital to get a second opinion once he's discharged.  Hon's at that point and so am I.  We've been told over and over that Jefferson is the best, and we have met some extremely competent and knowledgeable medical staff.  But we're starting to feel uncertain that we are still getting the best.  Today Hon said his head GI doctor came down to the ER to see him, but didn't actually walk into the ER exam room.  He and his entourage just stood at the curtain opening and talked to Hon.  The doctor asked him why he was in the ER, and when Hon told him about the excessive vomiting, the doctor just said, "Oh we'll just get you on some  fluids and you'll be good to go!"  And then left.  And when I called the Nurse Practitioner this afternoon to get an update, she was asking me about Hon's G-J tube placements. Shouldn't she know that??
Hon said even the ER doctor feels that something is blocked inside, as evidenced by the fact that Hon vomited with just a sip of water and pills.  And I keep thinking back to yesterday when the GI Nurse Practitioner originally said it was probably a blockage.  But once she checked with the doctor, he rules that out and she changes her story.  We're starting to feel that the doctor is either stumped about what to do with Hon, or he's getting bored with Hon's case and so Hon doesn't get the priority anymore.  Good grief...we've been at this for 91 days!  We should at least see some improvement!  Instead we seem to be going backwards.

Hon starts to fall asleep and tells me to go home.  I've only been there for 2 hours.  It took me practically that long to get down there!  So I head home a different way, determined to figure out an alternate route to the expressway so I don't get stuck like last night.  I am successful with using 16th Street as my route to the Expressway.  So I got another tour of another section of Philadelphia!   The car decided to take the Mall Boulevard exit off I-76 and so I make a pit stop at the King of Prussia Mall.
Sometimes retail therapy just helps.

Day 90:  Tuesday, Jan 31
Hon was up at 2 or 3 am vomiting again; not much warning but at least this time he hits the bucket, so no Chinese laundry drill in the early morning light.  We go back to sleep for a little bit until the alarm clock and the IV pump alarm remind us it's time to get up for real this time.  He's doing pretty good until we get out in the family room around 7 am.  I'm making up his daybed on the sofa and Hon's vomiting again into the waste can.  #2.  The visiting nurse arrives at 7:45 and we tell her about our night/morning.  She decides to call his Jefferson GI doctor and let them know what's going on.  By the time I get to work, the GI team Nurse Practitioner as already called me.  I tell her about the strawberries and my theory about the fact that what's in his stomach isn't going anywhere except out the port holes or back up the escape hatch!  She believes that his drain tube may be blocked from the inside and so the stomach contents, like water, find the path of least resistance.  She instructs me to stop all tube feeds and any food/drink by mouth until she talks to the doctor.  She also believes we will be headed to get a CT scan.   I am now desperately trying to reach Hon on his cell phone, but it keeps going to voice mail.  Luckily his Physical Therapist is due at our house around 10:30, so I call her to help me get word to Hon to shut it down - unplug, stop drinking, and don't eat that piece of toast that I thought would be a good idea to try to settle his stomach.
Meanwhile, the GI Nurse calls back.  She talked to the doctor and he does NOT want a CT scan, but he wants to see Hon in his office on Thursday.  I'm thinking to myself, "And do what?"  Especially if he doesn't have any images to look at?  How is an office visit going to help us?  She also says that Hon should stay on the tube feed but nothing by mouth.  So now I have to call the Physical Therapist again and change the plan.  Poor woman just wants to do her exercise routine and now she's in the middle of this seemingly indecisive care plan!  She has Hon call me on his cell phone (which was turned off).  He tells me he just threw up again, right in front of the PT lady.  #3  By now she's probably wishing she had taken a different appointment today.
This latest Vomit Update gives me another opportunity to call the GI Nurse Practitioner and request that they reconsider the CT Scan plan because I'm concerned that Hon will get dehydrated causing his electrolytes to go out of whack again.  She calls back after an hour and says that the doctor didn't want images, just the office visit.  I try to impress on her that I don't want to waste a trip down to the City for a doctor appointment only to be told then that we need a CT scan that we could have gotten 2 days before and been ahead of the game.  She assures me that Hon's vomiting will soon stop because he won't have anything else in his stomach by now, but to be sure and call if he develops abdominal pain, fever or continues to throw up even though he's only on the tube feed - because that would be very serious.  She just doesn't seem to get that I'm not interested in getting to "very serious"...I want to head this off at the pass, somewhere around "a little concerning".
The next few hours are filled with phone calls with folks who try and advise me on how to proceed.  I call Hon around 3 pm to check in.  Our neighbor friend stopped by to drop off some beautiful flowers and Hon vomits again.  #4.   Not very hospitable.    Hon is annoyed that I called because I woke him up, and instructs me not to call him during the day;  he'll give me the updates when I get home.  His irritable self reminds me of 2 weeks ago when he had such low potassium and it made him talk strangely.  I fear the potassium level is dropping again, and I don't want to get back on that spaceship (see Day 71 for explanation!)
More phone calls to consultant Dr. Larry who is now back from India.  He doesn't like the way this is going and feels we need to go to the ER.  He offers to try and reach the GI doctor.
By the time I get home, things are not good.  The IV pump alarm is beeping because it's out of dosage.  Hon's laying on the sofa with the wastebasket right by his side.  He holds up his hand showing all 5 fingers.   #5, 6, 7, 8 and 9.   Trying to convince him to let me drive him down to Jefferson doesn't go well.  He's irritable, argumentative and surly.  But he's also pale, worn out and dejected.  Finally he comes around and we make preparations to get him down there.  Two buckets, 2 towels, trash bags and a lot of paper products.  In between gathering all the supplies, we get interrupted by #10, 11 and 12.  We finally get into the car and start the trek down the Expressway.
Thankfully traffic moves along at a good pace.  Hon's pretty quiet, but so far, no episodes.  We make good time and get right into the ER where they promptly put him through triage.  We are a sad sight carrying our bucket, but Hon still hasn't had to use it, and it's been over an hour.  The good fortune with prompt service comes to a grinding halt as we are subjected to another 7 hours in ER while they do all the normal chest xrays, blood work and exams.  When they finally come in and hook him up to IV fluids, potassium (his level was very low) and Zofran (anti-nausea), I know he's bought himself overnight accommodations.  Our entertainment for the evening is the TV in the ER room and a guy outside the ER room who is obviously being treated for either drug or alcohol abuse as evidenced by his widely dilated pupils and shaky hands and feet.  They didn't even put the poor soul in an ER room - just had him laying on a bed next to the Nurses' Station.  Something tells me he's regular.

The ER doctor comes in to report that Hon's potassium level is very low, but all his other levels are good.  A spot of pneumonia showed up on the chest xray which could explain his mucus-y cough these past few days.  White blood cell count is good.  Hon is much more alert and interactive after being on the IV fluids for 2 hours.  He goes down to have a CT scan, but the results are not back yet.  They want to check to tube blockage and also start him on an antibiotic.
By 1 AM, I've had enough of the ER and enough of Hon who is now fussing for me to go home.  The going home takes an extra 1/2 hour because the only route I know is closed for construction.  I don't do a good job of following the detour signs and end up all the way down at Penn's Landing.  Thank goodness for the lady in the box (GPS) who gets me turned around and finally on the expressway headed west.  I finally get home at 2:30 am.  It's going to be another short night or early morning.  At least I won't have to do the Med Shuffle in the morning.  Just have to get myself up and out the door - and I think that will be challenge enough.


Day 89:  Monday, Jan 30
After the easy pace of the weekend, we're back to the sprint of the weekday mornings.  We are a team as we go through the checklist of vitals, bed sore cream, new tube feed bag and morning med treatments.  Unfortunately as Hon does his morning weigh in, the number is not good - down another pound.  I don't even know what to say.  He doesn't say anything.  But we both know that we're going to be in big trouble with the doctor if we don't turn this around by the Feb 15 doctor appointment.
Lunch Angel Cheryl comes for mid-day meds and brings her husband Steve (Hon's nephew) with her!  Hon enjoyed catching up with Steve and reported in with Cheryl that he had strawberries for this noon time snack.
By the time I get home after 8 pm, Hon tells me he threw up again.  This time he didn't make it in time.  So now in addition to laundering sheets, towels and clothes, I also get to clean the carpet in our Family Room.  Odd thing was that he brought up the strawberries.  You have to wonder about the fact that he threw up at 5:00 pm something he ate at 11 am.   And his leaky "port holes" oozed a red liquid all afternoon.  It's almost as if the food and liquids he is managing to take in are still not being absorbed by his system. 6 strawberries should not be oozing out of your gut 7 hours after you eat them.  He goes to bed with nausea.  But no diarrhea today!  As Hon says, "We get one trouble spot resolved and another one crops up!"
Tomorrow he gets hit with double check-ins:  nurse at 7:30 am and PT at 10:00 am.  At least he'll have 2 visitors tomorrow - that will make the day go by faster!
After all my nighttime chores, the last one was to take the trash cans up to the street.  Out where we live, we have no street lights, so on a clear night, you can see stars everywhere.  And tonight was perfect...there were hundreds of stars glimmering against the jet black sky.  I even got to see Orion and the Big Dipper.  Walking back to the house, there is total silence underneath the glimmering stars.  And I can't help but gaze upward, thinking about how each star is someone special who used to look out for me, but now they are in Heaven watching over me...Mom-mom, Aunt Edna and Uncle John, Anna and Horace, Helen, etc.  The brightest star is the one I call my Daddy Star - it was really shining and sparkling tonight.  With all those wise and wonderful Heavenly angels making intercession for us, things just have to get better.  They just have to.

Day 88:  Sunday, Jan 29
Today was pretty quiet - no visitors, no appointments.  About the only exciting thing that happened was that the new battery for Hon's cell phone finally arrived.  He's back in communication!
Hon did most of his treatments today, but as usual, he peeters out after 4 pm.  He did eat 3/4 of a piece of toast for breakfast, but then in the afternoon he kept saying he was really tired and wanted to take a nap.  Problem is he sleeps until 6 pm, and then is very lethargic the rest of the night.  I made elbow macaroni for him, but I don't think he even ate 3 tablespoons.  He agreed to eat a popsicle, but again, only a couple of bites.  When he weighed in this morning, he had lost a few more pounds. His next doctor appointment is Tues Feb 15.  They said if he maintained his weight, they would consider taking out the tubes.  As of the past 3 days, we are trending in the wrong direction.  I start to get frustrated - thinking to myself, "He's not even trying. He's just settling for the tube feed and not pushing himself!"  But then I have to remind myself that I can only offer to cook whatever he desires, but I can't make him eat. 
The most annoying thing lately is that both tube sites are leaking - badly.  We have to change the dressings every day - sometimes 2X a day.  The sites leak all over him, his t-shirts and whatever he's laying on (sheets,blankets, etc). It is much worse than when the tubes were originally put in. And the leakage stinks - literally!  It's to the point that I can tell that he needs his dressings changed just by the odor.  I think I've done more laundry in the past 2 months than I did all of last year!   I had hoped that the possibility of getting those tubes out would be motivation, but doesn't seem to be the case.   I took him with me this afternoon when I went to the pharmacy to pick up his Lovenex refill.  Hoping the change in scenery and fresh air would perk him up.  But he spent most of the ride reclined in the seat, with his eyes closed.   Not quite the Sunday drive I had hoped for.  So a lot of expectations today - he would have gained weight, he would have eaten more, he would be working towards getting those tubes removed, and he would have enjoyed his car outing - all sort of letdowns instead.
We can't remember if the nurse or PT is coming tomorrow.  Well, Smokey probably remembers, but he's not talking.  Guess it'll be a surprise to see who shows up on the front door!

Day 87:  Saturday, Jan 28
Very thankful that we had 2 Kenny's Angels who gave up time on their Saturday to do wellness checks and be boredom-busters so that I could meet a commitment to attend a meeting in Scranton.  They were not only good company, but they encouraged him while he did his various treatments.  So proud of the way he's taking ownership of doing the tube feed replenishing and the banana flakes and protein supplement treatments.  He had a good day -  no nausea, no diarrhea - and he got to spend the day with some of his dearest friends.  Thank you Diane and Susette!

My trip put me on the road for 2 hours each way.  A lot of windshield time and so a lot of think time.  As I made the trek on Route 100, Route 29, I-78, 476 and I-81, I found myself reminiscing about all the places that Hon and I use to frequent and really enjoyed...Friendly's in Pottstown where Hon always got the chicken noodle soup and we shared the Hunka-Chunka Peanut Butter ice cream sundae;  Americana Diner in Boyertown;  Main Street Pub (Hon's favorite dinner entree - Chicken Pizziola) and Pied Piper Restaurant (awesome desserts) in Bally;  the Turkey Hill mini mart in Hereford where we'd always rendezvous vehicles when I had to do weeknight fair visits in the north;  the Trivet Restaurant in Emmaus; Penn's Peak in Jim Thorpe for lunch with fair friends Mike and Judy;  and I-81 which was the path to our getaway in Canada.  So many of our fond memories are connected to food - and anyone who really knows Hon knows that it was all about the food.  If he didn't eat at regular times, no one was spared from his grumpiness!  And so that is why it is so difficult to see him not enjoying food or not being genuinely hungry. 
The more I drove, the more it became very easy to lapse into a pity-party and ask, "Why Lord?  Why must we walk through this valley?  Why do we have this insurmountable mountain?"  And then a song came on the Sirius radio on the Enlighten station..."Sustaining Grace" by Karen Peck and New River.  It was if the Lord was saying to me, in that small voice that you only hear when you are alone in your car, driving long miles of highway, "I am there. I've always been there.  For every valley and every mountain you've encountered, that's My chance to remind you that I care enough to keep you going, see you through, give you strength, help you down those uncertain paths.  You're stronger because of Me."  And I realize that every trial since this storm hit our lives just magnifies His love.  And I wouldn't see that if I didn't have the trials.  I now understand I am not being punished, but rather am being blessed because I get to see how the Lord is watching us every minute and giving us sustaining grace every day.  I hope you are as inspired by this song as I was today. 
https://youtu.be/lESpo4RSqx8     

Day 86:  Friday, Jan 27
Hon felt better when he woke up this morning, which leads me to think his vomiting yesterday was a result of the food he ate, or the fact that he ate food at all.  After over 60 days of no real food, his stomach was probably in shock and not very happy that it had to work yesterday!  This morning he gets himself washed, dressed and even does his own temperature.  Blood pressure seems higher today.  But all his other vitals are great.  Still haven't broken the 170 lb mark yet.  He mixes his Banatrol and administers it while I finish getting ready for work.  We still haven't accomplished all our morning routines in less than 2 hours.  Don't sign us up for the NASCAR pit crew...our driver would definitely come in last!
He was subjected to a very aggressive physical therapy session this morning and that really tired him out.  10 trips up and down the hall walking, plus squats!  Aaagh.  I don't care how you feel, squats really make your muscles hurt.  So when your muscles are as atrophied as Hon's, his muscles were screaming in rebellion today.  Miss Power PT is new and very much wanting to do a good job, so poor Hon is her guinea pig.  But Miss Power PT is very impressed with Hon's progress, even since she saw him last week.  I too notice that he walks with more purpose now (no more shufflling).

New treat today when lunchtime angel Cheryl brought little man Anderson with her to do Hon's mid-day meds.  Hon enjoyed watching Anderson explore our house, especially the house phone.  Kid probably thought he was looking at something from the Stone Age - a phone that has a cord and push buttons...fascinating!  Hon said he got more tired just watching this young man's energy.  Smokey - not so sure.  Anderson was his first little person and I don't think he knew what to make of it.
Next visitors was Fair friends Sue and David before they head south to warmer climates.  I came home to a basket of goodies including caesar salad (romaine lettuce already chopped; shredded parm cheese and homemade caesar dressing), sausage and kale soup, beef tips and noodles and a festive Cotton Candy candle to remind me how sweet Fair people are.  Our refrigerator smiles every time I walk past it because other people have filled it with goodness.  It was starting to despise me because of lack of attention.

Hon stays up until 8:30 pm but he is obviously tired.  I have a pretzel snack and he wants a pretzel. But 20 minutes later he's complaining of indigestion.  So we call it a day, fill up the tube feed bag and put him to bed.

  
Day 85:  Thursday, Jan 26
Training began at 0700!  Last night I pre-measured all the water (for the Banatrol packets) and the ProSource "syrup" into individual containers.  Hon comes out to his recliner and I lay out the plan for the day...he's going to do his own treatments today.  He doesn't look very pleased.  But I persevere by showing him how everything is ready to go - all he does is mix, flush, administer into J tube, flush and done.  I wrote out his whole day's schedule, and basically there is something to do every 2 hours!  I walk him through the Banatrol process.  He knows what to do (good grief, he's watched me do this since early December!), but has difficult drawing up the solution into the syringe.  Just that little bit of exertion to pull up on the syringe tires him out and makes his muscles shake.  But I tell him this isn't a sprint; it's a marathon.  If he can only draw 30 ml at a time, then so be it.  It takes him 3 syringes until he gets it all done, but he got it done.  And he seems somewhat energized by the fact that he did it by himself.  By the time we finish, Nurse Victoria has arrived and starts vitals check, changing dressings and administering the Lovenox injection.  Hon's vitals are excellent today.  And other than that pesty bed sore, she's very pleased with him.  Me, too.  I leave him with the goal to do the best he can with sticking to the schedule.  Just do what he can and we'll figure out the rest later.
I get a text message from our noon time Angel Cheryl as follows:  "Hon is doing great.  Said he had applesauce this morning, ate some tapioca pudding after I gave him the metformin and ProSource.  Was scheduled for Banatrol at 10:30, said he did it at 11:15, so that's not bad.  Was sitting up and watching TV, and up and walking around at bit.  No reports of diarrhea."   It's the best news I've had in a long time.  I am so excited to go home and tell him how proud I am of him.
I have errands after work, including picking up more Gatorade and GingerAle for Hon, and get home by 1900 hours.  But my heart sinks when I open the door and see no Hon.  The IV pole is gone, which means he's already in bed.  When I try to wake him up he tells me he threw up twice around 3 pm, right after he had taken his meds, and he had chills.  A quick check of his temperature shows it's 98.1, so thankfully no fever.  He's very dejected because he doesn't understand why it came over him so fast.   "I was right on schedule with everything until this happened," he says.  We talk through possible reasons.  Several people have a stomach bug this week - some have been with Hon; others have been with people who have seen Hon. I give him some of his anti-nausea syrup and put him to bed.  So disappointed for him.
I come back out to the kitchen and start the measuring for Friday's schedule.  Still trying to make sense of it.  Maybe it was the tapioca pudding which he is really loving!  Hoping that this is just a temporary bump in the road and not the start of any sickness like the flu.  As extra precaution, I grab the Chlorox wipes and attack Hon's bathrooms to drive out any germs that threaten to ruin our weekend.

Day 84:  Wednesday, Jan 25
And the angels keep coming.  Kenny's Angel Squad multiplied today as many stepped forward to keep the journey to healing going.   It started early with Chauffeur Angel Rick and Med/Tech Angel Nadine picking Hon up at 7 am and heading back down to Jefferson - this time to Methodist Hospital in south Philly where Hon met with his vascular physician.  Nadine sat in on the appointment and even taped the audio from the doctor visit on her cell phone so that I was able to listen to it later - so much better than relying on Hon to give me the details I always crave but he never seems to appreciate.  While we were really wishing that Hon would be released from his care and the daily Lovenox (blood thinner) injections would come to an end, it was not meant to be.  The doctor has signed Hon up for another 2 months of daily injections as a precaution.  The clot in his splenic vein in his stomach is not life-threatening, but since blood clots are a typical circumstance with pancreatitis, it is best to keep doing the injections until Hon makes progress and has all his G-J tubes removed.  So he's signed up for another appointment on March 22.
Once his chauffeur dropped him back at home, Angels Russ and Mary Lou came to visit with lots of goodies.  Not only was there engaging conversation about kitty cats and leaky windows but there were homemade mashed potatoes for Hon's "soft food" diet, and a refrigerator filled with my favorite foods including ham balls and macaroni and cheese from Shady Maple.  Such a treat!  And I'll just have to take one for the team and eat it all myself since Hon can't have pork products or cheese...wouldn't want him to get sick, now would we??
Angel Cheryl made her daily trip to check on Hon and administer his meds through the J tube.
And the last Angel of the day was Gerrit who made visit after 3:30 pm.
By the time I got home, Hon was pretty tired from his day of Angel visits and activities.  But it was a good tired.  He did eat a little pudding for me and let me give him the ProSource protein supplement.  In speaking with this GI nurse today, the protein is critical in building up his muscles.  I learned that I don't necessarily have to give it to him in his J tube;  the supplement can also be mixed in with his soft foods such as soups or smoothies.  Tomorrow will be another level of training as I hope I can get Hon to do the J tube administration of the ProSource and the Banatrol.  Since Tube feed is 6X a day, Prosource is 3X a day and Banatrol is 4X a day, the only way we can get all these doses done is either he has to do them or the Angels have to learn how.  He's gotten pretty good at replenishing the tube feed bag, so we'll see if he can advance to the next level!

Day 83:  Tuesday, Jan 24
You've heard of Charlie's Angels?  Well, we've got Kenny's Angels.  Now they don't all look like Charlie's Angels (although that would certainly make him happy!), but they are just as dependable and resourceful.  Today's cast included neighbor friend Gary who was Hon's chauffeur down to Jefferson for the endoscopy.  The doctors were behind schedule by 9:30 am, so Hon's 10:30 procedure ended up starting at 12:30 which pushed the end time to 4 pm and home by 6 pm.  Long day.  When I got home, he was sound asleep on the sofa.  But he did well and got to actually be an outpatient today - the way it should be!

Doctor would like him to try and eat soft foods for the next 2 weeks.  Goal is to maintain or increase his weight and tolerate real food.  Still have to stay on the liquid food 24 hours a day.  IF he does well, they MAY take him off the liquid feed pump.   So no more endoscopy in the foreseeable future.  Next steps is an Office Visit with the GI doctor and a CT scan in 1 month.  Hon will need a few more endoscopy procedures because they still took out a significant amount of necrotic debris.  But for now, just trying to get him to eat is the focus.  So back on the tube feed for tonight.
His Vascular dr appointment (for that splenic vein thrombosis) had to be rescheduled.  They offered Feb 10 until I informed them that we will be out of Lovenox needles by this week.  Then suddenly they had other appointment times to offer.  Unfortunately they made it for tomorrow, and he has to go to Jefferson's Methodist Hospital in South Phila!  Poor Hon - back to the City the day after a procedure.  But like I told him, let's just get it over with.   The last time we were at Vascular doctor, he didn't think the blood clot was anything to be concerned about - just a result of the pancreatic cyst compressing everything and pushing on the vein.  So maybe now that he's had the endoscopy drain procedure, the blood clot will be greatly reduced and Vascular doctor will release him.
Hon took all his pills tonight (except the dreaded antibiotic).  The doctor honored my request to get a liquid antibiotic which we will have to pick up tomorrow.  He even took interest in learning how to change the bag on the feed pump.  Now just have to teach him to do the administration of the banana flakes and the protein supplement through his J tube, and I might actually be out of a job :-)
Good night Angels!

Day 82:  Monday, Jan 23
Back to the NASCAR pace of a weekday morning.  We get up and dressed and situated (Hon even helped make the bed this morning), but no time to do the normal vitals check - just a quick check of temp.  Hon is still resistant to getting the ProSource protein supplement through the J tube - more negotiations which at 7 am isn't very animated.  We finally compromise on 10 ml now and the balance of 30 ml this evening.  Have to replenish the feeding tube bag and make notes for Hon on what to take at what time.  No blood thinner shot today in preparation for tomorrow's procedure.  Then I'm out the door and he's on his own.  Nephew's wife Cheryl is the mid-day check in to do more meds and make sure the feeding tube is being replenished.
Occupational Therapy comes out to assess Hon at 4 pm.  "Gus" reprimands him for not wearing socks, and says he needs a bench seat for inside the shower.  That's a great suggestion - for when Hon can actually take a shower.  He's not allowed to get the tube sites wet.
By the time I get home at 7 pm, Hon is sound asleep on the sofa.  I have to wake him up and begin 20 questions:
How was your day?  OK
Any Diarrhea?  No
Did you go at all?  Just a little
Do you think now you're constipated?  No
Do you want to take the remainder of your ProSource?  No (he is now in breach of contract from this morning's negotiations)
He's in bed by 8 pm.  We hook him up to the remainder of his tube feed.  Then he's "no food-no drink" until after the procedure tomorrow.   He's very relieved to be free of his IV tether for the night.
Once again I'm entrusting him to the care of others to get him down to the City to the hospital and hopefully bring him home same day.
Best News of the Day:  The Banana Flakes Arrived!!  

Day 81:  Sunday, Jan 22
We woke up late - I think we're just so thankful for sleep!  Hon had a rough night - up a few times and then threw up. It was our comic moment - he's sitting in the bathroom, throwing up into the wastebasket, Smokey is sitting on floor watching him in wonder of what he's doing, and I'm standing in the bathroom door wondering why this is happening.  Hon says, "What a way to spend a Saturday night!".  True.
But this morning Hon's actually feeling pretty good.  He comes out and sits in his recliner, turns on the TV, is reading the newspaper and even asks to watch the video from last night's convention event.  We try a new strategy with the meds, trying to figure out which one may be causing the diarrhea.  We only give one med at a time.  The ProSource protein supplement - usually 90 ml at one time - is reduced to increments of 30 ml - 1 in am, 1 scheduled for noon and the last scheduled for evening.   We stop taking the "anti-diarrhea" pill that is supposed to combat the antibiotic.  When I leave at 1 pm to go run errands, he has not had any diarrhea.  Maybe we're finally on to something!
I went to a foreign land today - the grocery store.  I haven't seen it for almost 2 weeks.  With Hon not eating regular food, I forget to go buy any for me. 
When I came home I am greeted with the news that neighbor Mary Lou stopped by with homemade spinach/ham quiche and fruit.  So excited - I love quiche!  He also tells me that he successfully replenished his tube feed bag once and he had taken his regular meds at 2 pm. And still no diarrhea.
Up to bat...I take a swing at Round #2 of the protein supplement; but  he balks.  He has determined that the ProSource is the source of evil diarrhea and wants no more of it.   Since the last thing the nutrition nurse told me was that the ProSource is the priority, I try a different stance - we could wait another hour?  Strike 2.  How about I break this next dose down into small increments?  Strike 3.  Out Number One.
He goes to bed around 8 pm, knowing that he will need another feed tube replenishment around 9:30 pm.  And he will need to take the dreaded Antibiotic around 11 pm.  When I go in to do both, he gets up and uses the bathroom. No diarrhea, but stomach is still feeling tight and I wonder if now we're looking at the opposite problem.
When we try the old antibiotic in applesauce trick, he gags and only gets down half the pill.  The dr specifically told me if I cut the pill, he has to consume all of it.  Not take 1/2 now and 1/2 later.  Out Number  Two.  He also says he has a headache and wants liquid Tylenol, which we don't have in our arsenal.  Out Number 3.   I walk back to the bench and head for the locker room to enjoy my spinach and ham quiche.  It sure tastes good.  Refueled, I come to the plan that I will need to make more phone calls tomorrow to our Jefferson coach to figure out another game plan for the dreaded antibiotic and the ProSource.  Because I don't think I'll be getting traded to another team any time soon, so we gotta play ball!

Day 80:  Saturday, Jan 21
What a roller coaster day.  On one hand I'm experiencing the Convention/Fair Queen competition via my fair friends' texts, Messenger and Facebook live feed.  On the other hand I'm shopping at the pharmacy and trying to help Hon through another frustrating day of diarrhea.  We're doing ever med, every food supplement, everything they told us - and yet the diarrhea just won't stop.  He's getting to the point where he doesn't want to take anything.  And if we don't get this stupid antibiotic in him, I'll get reprimanded by the GI team again for not following instructions.
His supply of food came today.  So we're just down to the missing banana flakes.  I think he was going a whole lot better when he was getting those.  We just have to muddle through Sunday and Monday without it.
We just can't connect the dots to figure out what is causing the diarrhea.  Is it the antibiotic?  The other antibiotic that is to counteract the diarrhea side effect from the first antibiotic?  Is it the protein supplement?  We don't know but we're putting so much anti-diarrhea medicine into him now, we don't know what else to do.
Tonight he complained that his stomach is really tight - he has the sensation of when you eat too much.  But no pain - just fullness.  But we don't dare open the stomach drain - that's what got us in the predicament 2 weeks ago.  Technically they told us to open the stomach tube and let it drain, but now they don't want him to drain because it means he loses a lot of electrolytes.
Not sure how we're going to manage a 1.5 hr drive to Jefferson on Tuesday for a procedure with the diarrhea episodes occurring every hour.

Day 79:  Friday, Jan 20
Hon wakes up in a pretty good mood which is impressive since I was certain the dreaded diarrhea-inflicting antibiotic was going to be our enemy last night.  We have to hustle this morning because the Visiting Nurse is coming at 8 am.  She teaches me how to give him the Lovenox injects and do the finger sticks for the glucose check.  Now I am not only a pain in the ass, I cause pain.  I tell her my care schedule concerns.  She doesn't really have anything new to suggest except that maybe I just need to get better organized, have everything pre-measured (powders, water, etc) and color-coded so that all Hon has to do is mix and administer.  I'm going to need a bigger kitchen for all these containers.
The nurse no sooner leaves, and I no sooner put on my coat to got to work, and the diarrhea kicks in,  Clean up in aisle 2.  More laundry.  And I'm not leaving for work yet.  By the time we get him all situated, he's exhausted and just wants to lay on the couch.   That all too familiar look of exhaustion and defeat is back and I leave the house really questioning the wisdom in my decision to leave.  I try stopping the pharmacy to get the anti-diarrhea pill to offset the diarrhea-inflicting antibiotic, where they inform me insurance will only pay for 9 pills.  Great.  At a dosage rate of 3 pills/day, we're aren't going to make it to Wednesday - the last day of the antibiotic treatment.  Hopefully the banana flakes will arrive on Tuesday and save the day.
The team roster today is Cheryl at 12:00 and Joanne at 4 pm.  The Home Health Care PT lady is coming at 2 pm to assess Hon.  And I'm on the bench until 6 pm.  I spend my entire commute to work on the phone trying to get someone - anyone - to listen to my concern that we need skill nurses to come to our house every day to oversee the tube feedings and other drug administration.  But I continue to hit wall after wall.   Some agencies only offer "non-medical" - care duties like bathing, feeding, etc.  Private pay agencies can run $60 per hour.  Medicare might have home health benefits, but there are really stringent rules to qualify such as you must be considered "home bound" and the doctor must sign off on it.  We have long term care insurance, but again, you have to meet all the criteria.   Every phone call just seems like another trip down the wrong rabbit hole.
The home care team members report in after completing their respective shifts.  Everything seems to be going according to plan.  Convention team members report in on the happenings at the convention I'm missing.  Everything seems to be going great without me which sends a twinge through my heart.  I keep looking at the clock, thinking about what Hon and I would have been doing at that moment in time at Convention.   Co-workers stop by with offers of advice and references for where to get help.  Most of us agree that Hon should not be home alone...except his team at Jefferson.
The evening shift isn't the best.  We can only have 9 anti-diarrhea pills - $30.  That's over $3 a pill.  He won't drink the Citrucell - claims it's too sweet.   The PT assessor overworked him.  Smokey jumped on the "Fred" and it almost fell on Hon's head, and he's growing weary of all the medications - thinks none of them are doing any good.  Back when he was well, he rarely took anything when he was sick.  So this is a huge culture shock for him.  So we hook him up to the liquid feed and shut it down for the night.  Next shift:  12:30 am for another refill of the tube feed cocktails.  

Day 78:  Thursday, Jan 19
Busy morning.  Our morning starts with diarrhea.  This is very disappointing because he didn't have any in the hospital, and now as soon as he's home, it's back.  I'm starting to think Hon has an allergic reaction to me.   His nephew's wife Cheryl comes by at 11 am to learn our care routine - the one I just learned yesterday so it will be the blind leading the blind.  Home Health Care Nurse Angela comes by at 12 to do Hon's assessment of care.  Unfortunately 10 days had passed since his last care visit, so we have to start the whole process all over again.  Hon's friend Mitch stops by next.  Meanwhile Hon has a sudden bout of diarrhea and hurries off to the powder room, leaving our little morning cocktail party.  Hon's brother Gerrit shows up next.  I start to wonder if I need to start offering valet parking!   
Nurse Angela does her due diligence.  I'm still trying to write down the tube feeding and med schedule.  Cheryl is having On-The-Job training for tube feeding and administering meds and banana flakes through the J tube.  Smokey is the entertainer.  Hon is supposed to be on an antibiotic, but since I wasn't able to get to the drug store last night to pick it up, brother Gerrit is elected to go and fetch the prescription.  Everyone has a part to play in our comedy drama.
"Yes!  We Have No Bananas, We Have No Bananas Today!"  The latest problem is that we're going to be out of Banatrol by the end of the day - these are the banana flakes that add bulk and help control the diarrhea.  For something that is supposed to be such an amazing medical food, it sure is elusive,  Jefferson has researched where to buy but only came up with online such as Amazon.com or the manufacturer's site;  our local Rite Aid pharmacy even called other pharmacies in the area, but no one carries it in stock..  So Cheryl is on a banana flakes mission.  She calls the manufacturer, the local whole food stores, and even other hospitals.  No luck.  Our only option is to order it through a local pharmacy - which means we will have no banana flakes until next week.
I make a lot of phone calls - my primary call is to the Jefferson GI Nurse Practitioner to complain that the antibiotic they prescribed indicates a side effect - it could cause diarrhea  - News Flash!  We have enough diarrhea.  We don't need any more!   She says, "Oh, yes, we'll probably have to order another medication to treat the diarrhea because it's important that he takes that antibiotic!"   So now Hon takes an antibiotic and then another pill to offset the side effect of the antibiotic.  What a racket.   Next I tell her we have no bananas.  She says we can use CitrucelI as a substitute.  I also express my wish that Hon had been discharged to skilled nursing care facility (we have a lovely one just down the road) where he could have gotten 24/7 skilled nursing care.  All of the meds, tube feeding, etc. are too much for me to do and still go to work.  And many of Hon's friends and family have also expressed concern that he should be somewhere that would give full-time care.  Her response?  "I wish you had made your wishes known before discharge because then we could have investigated that.  But PT evaluated him and he was walking, talking, alert...so they just discharged to home with home care.  And it's very difficult to transfer to a skilled nursing facility from home.  That needed to be set up when he was in the hospital."  I am very quick to retort that I didn't think I had to make any "wishes" known, but that instead the case manager (whom I never met) would have come to me and discussed the options.  It just seemed that once his vitals were all stable, they just unhooked the IVs and declared him fit to leave.  And while his physical condition may have warranted that decision, the amount of at home care I am expected to do should have been taken into consideration.  Even the Dietitians were commenting about how this was all so complicated.  So if we all agree it's so complicated, why is the expectation that I'm going to be able to do this at home??  Her response, "There is no reason why Mr. Dobson couldn't do a lot of this himself.  You spoil him by doing it for him."  It feels like someone just punched me in the stomach.  The man can hardly walk without hanging on to the furniture because he's so weak and unsteady, he sleeps 16 hours a day, and he has trouble remembering facts. How would I expect him to have the patience and the ability to do all this measuring, mixing and administering by himself?
I have to take a break from this medical gridlock.  So I take a detour and start managing Convention stuff from afar using my cell phone.  It's a welcomed diversion to solve problems about concert meet and greets, flowers, judges, photography, award ceremonies and seminars.  At least I feel effective in this arena.  Medical drama, not so much.
Hon gets nauseated around 7 pm.  We think that maybe the med that went into the J tube went in too fast.  He lays back on couch and soon the feeling passes.  But now we have to take the dreaded diarrhea-producing antibiotic.  And the thing is a horse pill.  More phone calls with the dr on call and the pharmacy to see if I can crush and inject.  All answers come back "no."  So we cut the pill in half to ease the discomfort.  Now he's tired and miserable and just wants to go to bed - no tolerance for any of the "maintenance" items I want to do such as putting the clean sheets back on the bed.  He tells me I'm a pain in the ass.  While I know he doesn't mean it, it's hard to hear.  I cover him up, outten the light and go back to the living room carrying the weight of the day's labels...ineffective communicator, spoiling caregiver, and now pain in the ass.  Have to shake it off...still have to do more OTJ training with his sister Joanne so that she can join our cast tomorrow for "As The Pancreas Turns". 

 
Day 77:  Wednesday, Jan 18
It was a very short morning.  Actually there was no sleep at all.  I was up 24 hours straight.  Finally got all the convention stuff printed, labeled and organized for others to carry on the mission.  Neighbor/friend Gary loads it all in his truck and heads to Hershey.
Now shift gears to health care.  All indications that discharge is today, but stuck in the swirl between Nutrition and Medical.  Nutritionist calls me back and promises a meeting to discuss the administration of tube feedings.  Finally!

She kept her word - next thing we not only have 1 but we have 4 - the GI Nurse Practitioner Elizabeth, new Nurse Practitioner Sarah, Nutritionist Nurse Pat and Dietitian Sue (I like her!).  We sit for over 1/2 hour and go through all the supplements, the tube feedings, the oral diet, etc.   They have determined that we were leaving the stomach drain open too often so he was losing so much fluid and that's what caused the severe dehydration and malnutrition.  His GI team is the one that originally told us to open it up when he felt nausea or bloated, so we did.  Now they admit they had no idea how much fluid was coming out.  They acknowledge that this is a very unusual process to juggle all the feedings, meds, etc..  Hon is a very complicated case.  Yes, I've known that for years!!  Sometimes even the 4 of them had to talk ideas through. 

So here's the line up - pay attention, there will be a quiz at the end!
Liquid Feed - new formula Vivonex - powder form that needs to be mixed with 250 ml sterile/bottled water.  6 packs a day - 1 pack every 4 hours through the J tube
Protein supplement ProSource - gel form that needs to be watered down.  3 packs a day, all at once, administer through J tube one time a day
Banatrol - banana flakes to combat the diarrhea - 1 package mixed with 1/4 c of water and administered through the J tube.  4 packs a day
Creon - enzyme capsules - 1 capsule 3 times a day
G tube stays clamped.  Treat nausea with Fenergan meds
No meals at this time.  Can have low fat foods like mashed potatoes without butter (didn't even know that existed!), toast with jelly or pretzels.
Take all meds by mouth (picture me doing the "no-more-crushing-pills happy dance here)
So it begs the question...I'm giving him something 6X a day, 4X a day, 1X a day, 3X a day...how does a regular person who works full-time supposed to do this?  While they are sympathetic, they don't have any good suggestions except that they are going to try and have a Nurse Practitioner come to the home.   Hon doesn't seem quite as perky as yesterday - actually seems a little on edge.  I know how he feels.
Comic moment of the day - because you know, we just have to find one.  On our way home, Hon has to pee.  We're equipped with what he needs, but a little hard to pee in a car.  So I pull over in the parking lot of the nearest convenience store, and head towards the darkest part of the parking lot.  Hon jumps out of the car with his urinal and starts to do his thing.  Next thing we have the store manager coming out yelling at us for public lewdness, I guess.  I had to try and smooth everything over - they saw it all on their video surveillance.  Hon just kept on peeing.
Now I have more lists, more charts, and all this previous canned liquid feed in my living room that is no good and can't be returned.  Most likely the Medical Company won't take it back because it's now considered "contaminated" because it's been in the home.

I am very concerned about this skin around the G tube.  The incision site is leaking more.  Areas is still chafed.  Nurse Practitioner tells us to use baby wipes.  But by the time we put him to bed, the incision site is actually bleeding.  Something tells me this is NOT going to be good.  He's already irritated and I'm still trying to develop a care schedule.  I think we both need to get some sleep!

Day 76:  Tuesday, Jan 17
As usual, Hon's procedure didn't go according to plan.  Then again, nothing about this disease has gone according to plan.  The Endoscopy Procedure Unit took him up around 10 am, but then he was left sitting on the tarmac waiting for take-off - 4 hours!  When I got there around 3 pm, he still wasn't back.  Finally around 5 pm they brought him back to his room.  I got a chuckle out of hearing him out in the hallway, teasing Nurse Selena and the transport guy.  Sounded like my Hon!  He walked himself back into his room and sat on the edge of bed for awhile talking.  I was amazed at how well he was doing - he's never acted this upbeat after a scope procedure before!  Then I learn why.  When the surgeon went in, they found that the stents had moved and weren't in the right place.  They ended up taking out the stent between the cyst and his stomach, and putting in a bigger stent.  And when they do that, they can't do the necrotizing - the degunking - that requires the Roto-Rooter treatment.  It's too risky to do that kind of aggressive treatment when he's dealing with a new stent.  So we get invited to come back next week and try again.  Lovely.
Nurse Selena showed me  how to incorporate the banana flakes into the tube feeding.  The doctors ordered it to be dispensed in the iv bag, which is so much easier than what the instructions on the package say.  Nurse Selena says to do it the way the doctor tells you to;  not by the package.  I would if I could ever get a doctor to tell me.
We sit on the edge of the bed, resting our heads together, waiting for a doctor to come talk to us.  But nobody comes.  It's after 6 pm now.  My cell phone is chirping with emails and text messages from fair friends who are already at convention, missing us.  "I've really screwed up this year, haven't I," he says.   We joke that maybe we could get him transferred to Hershey Medical Center which is right across from the Convention Center.  Then I could still go to Convention and just drive across the way when I want to go visit him.  He's starting to get sleepy, and the emails/texts are coming faster now, and I know I need to get back home to finish the reports, emailing and printing and packing.  It's going to be a very long night or a very early morning.  I've never worked so hard for an event that I'm not actually going to.
Wednesday we try to get some answers on what his game plan is - Is he staying? Coming home? Are we getting new liquid feed?  Are banana flakes in our future?  More questions than we have answers.

Day 75:  Monday, Jan 16 - Martin Luther King Day
Got down to see Hon around 3:30 pm.  But unfortunately, because it was a holiday, there was a skeleton doctor team on staff, and they didn't even want to come talk to me because they really didn't have any updates on Hon since they are not his regular team.  He had a really sweet nurse Selena today.  So comforting and kind.  We had her before - I remember talking with her when Hon was admitted one of the other times.  She dotes on him and he had her hustling to get water, cups of ice and change positions in the bed. 

Hon was very talkative and alert.  He had been sitting out in the lounge chair for about 2 hours, but the chair isn't very cushy on his tushy, so he had enough of that. He also walked up and down the hall 4 times today.  He really gets moving with that IV pole aka Fred2.   Poor Nurse Selena is rather short, so she was having a hard time keeping up with him.   He also talked to neighbor/friend Gary on the cell phone.  It feels so good to see him engaging in conversation.  He did tell me today that he had some really weird dreams.  I'm sure he did - spaceships, bayonets and mass killings!   It'll either all fall away into a distant memory or become one hell of a story to tell!
The bed sore on his bottom is starting to heal, slowly.  But now I'm concerned because the skin all around his replacement gastric tube is all blotchy red!  Apparently it's been leaking all week, and now his skin looks chafed.  He says it doesn't hurt, but it looks horrible.   The nurse said the doctors are aware of it.  Would have been nicer if they had done something with that awareness.  Hon seems to think they will do something about the leaky hole tomorrow.  The skin around the J tube is fine. The Home Health Care nurse is not going to be pleased about this latest development!
They still have him on a very low dose rate of the new liquid feed.  Otherwise he gets diarrhea and then his potassium gets out of whack again.  Just seems like a vicious cycle.
He said that a surgeon came in this morning and they are definitely doing the ERCP drain procedure tomorrow.  It kind of stinks because he's finallly starting to be like his old self, and now he'll have the anesthesia and the breathing tube and it'll set him back again.  We don't know what time and we don't know if he has to stay overnight.  So Selena will call me if he goes in really early, otherwise I'll call her around 9 am to see if she's heard anything.  Thank goodness she's his nurse again tomorrow.  It just makes a world of difference when you have encouraging and happy people helping you through the not-so-fun stuff.

Day 74:  Sunday, Jan 15
No blog on Day 73 - really nothing to write.  My Queen Crew came by at 10 am and we went through the process of downloading my convention and queen contest duties to them.  That took until 1 pm.  Then it was a lot of emails, phone calls and computer time to try and get a lot of other convention and queen contest stuff done.  As the hours ticked by, I was less and less motivated to get in the car, make the 1.5 hr drive down to Phila on a Sat night.  They were calling for 1-2" of snow.  I was just bummed and never left the house all day.  I did call the hospital around 6 pm and got a very nonchalant nurse on the phone who didn't really seem too interested in talking.  She just said that Hon was ok and that he was sleeping.  As she put it, "He doesn't really want to be bothered by us."  Well, yes, that's probably true.  If you have people waking you up every hour to inflict pain on you by way of IV needles, finger sticks, feeding tubes and blood pressure cuffs, you probably would feel the same.  My take is that he is still in the "spaceship" and there's no point me going down to watch him orbit.
Today was another day of phone calls, emails and meetings.  The convention and queen contest stuff just keeps going with no end in sight.  Trying to get everyone everything they need to do what I would do if I was going is overwhelming, but I have to get it done.  Another long afternoon at the computer.  Again the hours tick by and next thing its 5 pm.  My heart is tugging at me to just shutdown the computer and drive to Phila, but my mind is telling me that I will only get further behind if I don't keep chipping away at the mountain of to-do's.  People are counting on me to pass information on to them so that they can ensure all runs smoothly this week.  Suddenly my cell phone rings.  My heart sinks when I see that it's Jefferson Hospital calling.  You know it's not good news when the hospital calls you.  The lady on the phone says that my husband wants to talk to me.  Hon gets on the phone and sounds very chipper.  He says, "We were wondering where you were?"  I hesitate because I'm half afraid of who "we" is...are there more people on the "spaceship"?  So I joke back, "Who's all there?"  And he gives me a typical Hon response - "Oh the room is full of dancing girls!"  It's good to hear the old Hon.  The phone call makes the decision.  Off goes the computer and down to Jefferson I go.  I don't get there until 7:30 pm (unreal how much traffic was headed east...where are all these people going??)  But I get there to find him watching TV and all the room lights are on.  He is obviously happy to see me and is very interested in catching up, asking a lot of questions:  1) how's Smokey?  2) how did I make out at Farm Show taking the chocolate contest display down?  3)  how's your mom?  ...then comes the question I was hoping to avoid.  4)  do you have all your stuff ready for Convention?"  I wasn't going to tell him because I didn't want him to feel that he was the reason why I couldn't go.  But now I'm stuck.  So I tell him I'm not going.  His face goes sullen.  He stares off into space and I hold my breath for what's coming next.   "Who's gonna run everything?  I just gotta get out of here because you're missing all the stuff you like to do."  I fight back the tears.  I tell him that everyone is being really great about stepping up and helping out;  they all know what to do, they don't really need me there.  They are a good team.  Everything happens for a reason.  Just not our year to go.  And then I change the subject to find out what he did today.
He admits that he doesn't really remember anything of the past 4 days.  Good thing.  He's still got some mental lapses, like he told me someone left a bayonet in the bathroom, and he thought Wednesday was Martin Luther King Day.   But he could tell me his potassium level dropped again on Saturday, and his new liquid feed gave him severe diarrhea all day.  Even the nurse said it was really bad.  Hon says it wouldn't be that bad if someone would just come when he pushes the call button.  He gets upset that he calls for help but nobody comes, so then he has an accident.  They are giving him the banana flakes and Imodium.   So today was still a lot of trips to the bathroom but not so uncontrollable.  They also dialed back the dosage from 75 ml to 35 ml.  He says he gave the doctor a hard time about not getting better, but I'm not sure that really happened.  But I do believe it's something he would say if given the opportunity!
I get a phone call from fair friends Mike and Judy and I put them on speaker phone.  Hon actually had a very good conversation with them both and it brought tears to my eyes to hear him so animated and joking with them.  He tells them he took 2 walking trips in the hall..."and it's a damn long hall!".
He has to use the bathroom and I'm encouraged that he wants to walk there.  Of course we have to wait for the Tech so that the IV Pole aka Fred-2 can be disconnected and mobilized. We have a really sweet Nurse Theresa who takes the time to show me how to give Hon the liquid Imodium in conjunction with his tube feed.  Now I think I understand better how to administer the supplements with the tube feed.
Our medical consultant calls me from India.  I tell him about the potassium incident;  he says that's to be expected - again because Hon was so dehydrated that it's going to take a long time to replenish.
By 9 pm Hon's starting to fade on me.  So we outen the lights, cover him up and say goodnight.  I always used to pinch both his cheeks before giving him a kiss, but now I can't do that because his cheeks are so sunken in.  So I just put my hands on both sides of his thin face, look him in the eyes and tell him that I'm so happy he had a good day.
I'm starved, so I ask the hospital security where I can go at 9 pm in Center City to get something to eat.  The one guard actually walked me around the block to NYPD Pizza on 11th Street (guess I must have really looked like a scared girl from the suburbs!!)  The city feels peaceful at this time of night with all the lighted buildings.  It doesn't seem so scary.  The guys in the pizzeria were really nice and the food was comforting.  I tell them that I'm coming back when Hon is better and we're buying a NYPD Pizza tshirt and having pizza here - some day.

Day 72:  Friday, Jan 13 - Friday the 13th!
Full moon and Friday the 13th.  I didn't even want to get out of bed this morning with that combo!
Got down to Jefferson by 4:00 pm, later than I had hoped.  It didn't really matter because Hon never really woke up to have any conversation.  The TV was on when I arrived, but he's far, far away.  When he does open his eyes, he looks so groggy and far away.  Then he just drifts back to sleep.   If anyone asks him a question, he just says "OK" or shakes his head yes.  They could ask him if they can take all his money and I think he'd says "OK".   His nurse Dawn says that he was very quiet all day, and was very compliant.  I am pretty sure he just sat in silence all day, except to answer "OK" to all the repetitive questions he gets from the nurses and doctors who act like he's just fine.
The Kidney dr came back, along with an entourage of 5 residents.  He says Hon's potassium numbers are great now and so he's signing off on this case.  Then the Medical resident doctor comes in, just in time for me to put my medical consultant who is away in India on speaker phone.  They are both so excited that Hon's numbers are so improved.  Why don't I feel excited?  Maybe it's because I'm looking at the shell of a man who doesn't talk, doesn't communicate and who is clearly in a place that I can't get to.   They assure me that it will take a few days - that he was so severely dehydrated that it was a real assault on his body.  They were actually shocked how bad his numbers were, so it's no wonder his brain is fuzzy.  But I keep thinking about how he was when I took him to the ER on Tuesday morning, and now he is completely out of it.  If he's doing to great, why does he seem so lousy?
After all the doctors, residents, nurses and techs leave the room, Hon starts.   
Him - "Hon, come over next to me."
Me - "I'm right here next to you."
"No, come right over next to me."
"I am sitting right next to you."
"No, come over here right next to me!"
(I finally get right in his face)
"Tomorrow..."
"Yes, tomorrow is Saturday."
"Yes, I know that....tomorrow..."
"Saturday."
"Stop repeating everything I say....tomorrow, when they tell you to go, you go.  Leave your computer, your phone, your little thing (referring to my portable hard drive)...just go.  Do you understand?  Yes or no?"
"No."
"I'm telling you, you gotta go.  Because if you don't, it won't be good.  Do you understand?"
"No."
"If you don't leave, you're gonna be dead.  You gotta go.  That nurse who was just in here, she'd better have her sh-t in her shoes.   Do you understand what I'm telling you?"
"Ok."  (at this point, I don't want to hear anymore, and saying 'yes' will appease him)
"Where are your rings?"
I have to show him that I'm actually wearing my wedding rings and his.

That's pretty much the last thing he said the entire time I was there.
The nurse started him on the new liquid feed.  He starts at 25ml/hr and they will increase it by 20 ml every 4 hours to make sure he can tolerate it.  He had a couple of accidents during the day that required entire bed sheet changes.  It'll be interesting how the night goes for him.  The dietitian did leave me the manual about Tube Feeding. Now I can study!
So I basically sat by myself tonight.  I talked to the nurses.  Nurse Dawn is from Antigua.  Her husband is retired lawyer and has actually moved back to Antigua.  She has to continue to work in Phila until her child finishes college.  Nurse Tracy comes on at 7 pm.  She's not happy with how Nurse Dawn set up the liquid feed.  She unhooks everything and starts all over.  The tech comes in to take Hon's BP;  I asked him to scoot Hon up in the bed.  He goes to get help.  He must have taken the spaceship to India because he doesn't come back.  When he does, he apologizes that he forgot us.  And leaves again.  Hon's hospital gown is soaking wet - not sure why, but no one comes to change him until 9 pm.  Oh, and they had to take more blood.   No wonder he wants to get out.
As of right now, he can't have his ERCP (cyst drainage) until Tuesday.  But then again, if everyone is going to die tomorrow, it doesn't matter.
It is a bummer of a night.  Where is my Hon?  He's far away, locked in some place that I can't get to. Physically he should be up, walking and talking  and recovering quickly.  Instead he is withdrawn and thinks the hospital is conspiring  to hurt him.  He doesn't talk to me and only barely answers questions when a dr or nurse talks to him.. When I leave, he doesn't even wake up.  I kiss him on the forehead and head back west, with a lump in my throat.  I just want my Hon back.

Day 71:  Thursday, Jan 12
Got down to Jefferson around 11:30 am.  Hon was no better.  Still really out of it and still on a lot of IVs to replenish his potassium and sodium.  He was sitting out in a chair but was clearly struggling to remember and  to answer any questions about what happened this morning.  He has a crazy cognitive moment - he tells me I'm to study my books that I've been keeping to document his health journey because he believes there is a double deal going on...there is a regular hospital and a teaching hospital and they are moving him during the day to the teaching hospital and using him for experiments.  And they have cameras in the room and are watching everything.  Oh boy.
He wants to go back to bed and dozes off.  At least he's not worried about hidden cameras anymore.  I set up shop with my work laptop and cell phone while he snoozes.  My consultant doctor calls from India and we were able to do a conference call with Hon's resident Dr Linda.   Hon's GI team did rounds this morning that they have determined that he is severely dehydrated and malnourished.  And they have now determined that it's nothing I did, but rather he lost all those electrolytes and water through the stomach drain.  They never realized how much was draining out of him, and never thought to tell me to measure the output.  So even though Hon was eating, drinking water and doing the tube feeds, none of that was actually making it to his intestines to be absorbed so he could get the nutrients.  They are also concerned that they are pumping potassium into him, but his numbers aren't improving. I feel sorry for Hon but a little bit vindicated as well.  I'm not the incompetent goof I was made out to be a few days ago.
I finally meet the mysterious dietitian - a very soft spoken and kind Dr. Sue who is sincerely concerned that Hon hasn't had anything to eat in 2 days, that his G-J tubes are leaking fluid, and is also very sympathetic to my frustration around all the changing rules with the tube feeding.  She is an answer to many prayers.  She enlightens me that there is a Manual on how to do tube feedings and she will get that to me, plus she's going to have Nutrition Nurses who are familiar with the tube feeding come and talk to me.  Breath of fresh air.
The ERCP (cyst drain) procedure is a no go again today until they can get Hon's electrolyte levels stabilized.
The IVs just keep coming.  Hon has another crazy cognitive moment.  He's laying there snoozing and all of a sudden he becomes very agitated and is insistent that I have to go.  Go?  Go where?  "Go to the top floor of the spaceship because the water is rising and we're going to drown.  You have to go. NOW!"  It takes a little persuasion to convince him that we're all safe, it's a beautiful day outside and there is no water rising.  He drifts back to sleep.  Oh boy.
They have sent a kidney dr to consult because of the malabsorption issue.  He determines that replenishment by IVs is really the best plan and to stay the course.  He explains that Hon was so dehydrated the IV therapy is kind of like filling a swimming pool with a straw.  His body needs to replenish all the water lost by the stomach drain and diarrhea before his blood work numbers actually improve.
Around 4 pm they determine that he needs a CT scan of his abdomen to make sure his G-J tubes are still in the right place.  Hon now has to drink (2) bottles of water, with a contract dye mixed in.  He is so out of it that even though he constantly asks for water, this is going to be a challenge.  We only have 2 hours to complete our assignment.  Hon starts out pretty good but he soon tastes the dye and little by little stops drinking the water.  1 bottle of water now seems like an ocean as I plead and cajole every 5 minutes, wishing that they had just ordered the CT scan without the contrast.   We are only 3/4 of the way through Bottle #1 when nurse Kristen is back with Bottle #2.  Hon clamps his mouth shut and refuses to drink anymore.  He repeats a line we heard about 4 weeks ago from another patient on his floor..."You can tell me I have to, but I don't have to."  I try everything -  they won't let me go home unless you finish your water...Smokey will be upset if you don't drink your water.....I will give you regular water (minus the dye) if you finish this test water.  I even try to tease him by pointing out that his Dobson stubbornness is coming out.  Nothing.  Finally I try the old "You want to get better, right?" tactic.  But I'm knocked off my core with his response, "I'm never going to get better...we're at the end."  At the end of what?  "At the end of life."  He stops talking and then suddenly he says, "There it is."  It sends a chill down my spine and tears to my eyes.  I wonder what he's seeing.  You hear about people who have near death experiences and briefly see the other side.  Nurse Kristen quickly goes out to contact the Dr and comes back to report that we don't have to drink anymore dye water.  I keep my promise and give him the good water.   Transport never comes for another hour so Hon got another deep sleep nap before heading down for his CT scan.  But not before another crazy cognitive moment when he tells me we're have to get on the boat.  Guess we're going for a cruise now instead of the spaceship.  That actually would be my preference.
It's now shift change and his lovely blonde-headed nurse Devon is back.  Of course Hon perks up when Nurse Devon is in the house.  She's whipping around the room organizing him, the IV wires, the bed, the blankets - she's getting the house in order!  Any question she asks, he competently answers.  Little stinker...he's not making HER go on the spaceship!
When he returns from CT scan, he is actually a little better.  He turns on the TV by himself and wanted to watch the Food Network.  Maybe the potassium is finally kicking in. I get in my spaceship and head west for home.  Tomorrow's another day.

 Day 70:  Wednesday, Jan 11
Hon was on potassium and sodium IV drips all day.  His metabolic stats did not improve enough to make it safe for him to have the ERCP (cyst drainage) procedure today.  They want to continue to monitor and give IVs to try and stabilize him.
I wasn't able to talk with any of his medical team today, so I finally drove down around 4 pm.  He wasn't in the room to which he was originally assigned because that room wasn't cleaned when he arrived.  His room was marked as "gowns and gloves" because they are once again testing him for C-Diff since he had diarrhea.  I sigh silently - this is the 4th time since November when they've isolated because they tested for that.C-Diff.  But hey, at least it got him a single room - they can't put a roommate in with him if he possibly has C-Diff.
Hon is very quiet and doesn't open his eyes.  When I go through the normal questions, he starts to answer but doesn't finish any sentences.  His GI nurse called after 6 pm to give me an update:  if his numbers improve tomorrow, he will have the drainage procedure;  all of the food/drink he's been taking orally has not been getting absorbed by the gut - it's all going out the stomach drain - they are going to monitor that better;  the dietitian recommended a new liquid feed - they just can't find it anywhere in the hospital;  Jefferson is going to be scheduling a Visiting Nurse (different from the Bayada nurses who have been coming) to do wellness checks once he's discharged. 
Hon is clearly out of sorts tonight.  For the most part, he just snoozes, but when he does wake; his speech is delayed or he reverses letters.  He told me that his original room was under "revonation" instead of renovation.   He tries to tell me what the dietitian said, but gets overwhelmed and tells me that he's so confused.  His eyes frantically scan my face and the hospital room as if he's searching for someone or something.  The anesthesiologist comes to evaluate him since he is scheduled to have the drain procedure on Thursday.  She asks him if his has any loose teeth.  Hon runs his tongue around his mouth, but again I see that overwhelmed and fearful facial expression.  He says, "I lost 2 teeth."  "What!!", I reply.  "Yes," he says, I lost them yesterday and I can't find them."   The anesthesiologist looks at me and decides that maybe I should sign the consent paperwork.  After she exits the room, Hon looks at me and says, "I saw Smokey over on the other bed."  He admits that he's very confused and can't remember anything - especially where he put those teeth - he's not missing any teeth!  I push the call button to get the Nurse, just sure that Hon's having a stroke or something.  His lovely blonde-headed nurse Devon goes through the normal neurological check...what's the date and year?  who's the president?  what's your name?  where are you?   He answers every question correctly.   Little stinker. 
Later Hon says that he can feel Smokey walking on the bed.  Hon is lying on his side with his eyes closed, telling me how Smokey is resting on his shoulder.  I call the nurse again.  She says she will alert the medical team, but as of the final minutes before I exit, no doctor comes to talk to me.  So I call the medical consultant we have through work...he's in Dubai, India - of course...because that's just how my life rolls!  But he is still very attentive and assures me that the lack of potassium and sodium will manifest itself as a sluggish brain.  He encourages me that while the nurses appear to be brushing me off, they are doing that they need to do to help him.   He is going to call me from India tomorrow.  I now have an international medical consultant!
After much soul-searching, I made the decision today that I am not going to Fair Convention next week.  While I have been continuing to prepare for it, the process of organizing family and friends to handle Hon's home health care for morning and evening, dressing, meds, and tube feedings will put additional stress on me, plus it's not fair to ask others to try and ramp up with the crushing of the meds and the tube feedings while I'm away.  And it is clear that Hon is not going to make an miraculous recovery in the next week.  And so I give up yet another area of my life for which I had great passion and purpose for the sake of the guy for whom I have great passion and purpose.  My purposes have been re-prioritized..
I cry all the way to the parking garage.  Life right now feels so unfair.  Every time I turn around I'm having to let go of yet another activity or responsibility.  The Enemy is really hitting hard this week, wanting me to feel left out and cheated.  Everything I've worked so hard to achieve is slipping through my fingers like sand.  But I can't let Hon slip away, and so if giving up everything else is what I must do, I have to trust that God is wanting me to die to self and let him work on me so that I can help Hon.
 
Day 69:  Tuesday, Jan 10

So this happened today.

We were on schedule to get all of our home health care tasks done and me out the door for work on time.
Then I heard a thud.
I run back into the master bath to find Hon scrambling to get back on his feet.  He became light-headed and fell into the shower.  He tried to break his fall, but the shower curtain let him down.
I got him to sit down and notice that he's holding the end of his stomach drain tube...not the end that goes into the drainage bag, but the OTHER end that is supposed to be inside his stomach.  He sat there fumbling to try and insert the end back into the drainage bag valve.  When I told him that was the wrong end he said, "Oh sh-t.  Hospital??".  Yup, I'm sure we're looking at a road trip.
Now here is Hon, no clothes, with a open wound where his drainage tube should be, and stomach drainage oozing out of him.  Quite the challenge to get him dressed and out the door to the car to go to the local ER.  I may not have won the Florence Nightingale Award, but I did my best to protect the open wound with bandages and towels.
The Home Health Care nurse called in our ER reservation in advance and assured me the local hospital could handle this.  Dislodged drainage tubes apparently happen more than you know.  Well, for us, it was a first occurrence and not something we want to re-live.
We got off to a rocky start in the ER.  First they started to tell me they couldn't handle Hon's case.  Then they gave us no blankets and no pillow.  Luckily I had Hon's Berkshire blanket with me in our "To Go" bag.  Thankfully we had wonderful ER nurse Lisa who was with us all day and was not only very attentive, but also very kind and funny.  She was Hon's entertainment today.  And we had our favorite ER Dr. who has now seen Hon 3 times since we started this journey.  He just shook his head when he walked in and I exclaimed, "We're BACK!!"    He put in a temporary catheter tube into Hon's drainage area to make sure the hole didn't close up - no anesthesia, no numbing - Dr. just stuck the tube in.  From the look on Hon's face, I took that it wasn't a real pleasant feeling.  And then he found out that Interventional Radiology could put in a replacement drainage tube - but not until 1 pm.  I went to work to fetch my laptop and Hon hung out in ER with Lisa and the other nurses.

The afternoon was filled with indecision and uncertainty.  While they were able to fix the drainage tube issue, Hon's bloodwork showed that he was one metabolic mess.  His potassium was very low (level of 2.0 - best is 3.5-4.0);  sodium was very low;  blood pressure was very low, and he was suffering from hypo metabolic alkalosis which is just a fancy term for too much alkaline vs. acid in his system.  Considering that we're constantly draining his stomach, and that's where acid is created, it's not surprising - we're watching all the acid drain out!   The local ER put him in for admission because of these whacky electrolyte numbers.  But I kept asking that someone touch base with his GI team down at Jefferson because I didn't want another lecture from Dr. Serious (see Day 57 for that story) that I didn't let him know what's going on.  This is when things got a little tense.  The ER was starting to get really busy, and I guess my request for a phone call to a specialist at Jefferson didn't enter into the schedule.  At one point the ER doctor told me he really couldn't diagnose Hon's problems in the ER and that next time I should just take Hon to directly to Jefferson since the ER goes through all this effort and the Jeff wants him transferred anyway.  Then it took a committee to decide how to transfer Hon now that technically he was "in patient" but was still in the ER.  It didn't make any sense to move him to a regular floor room while we waited for Jefferson Transport - no point in the floor nurses having to go through all the set up and tests only for Hon to leave tonight.  So the ER became our home until 7:30 pm - 12 hours after we first arrived.
The next blow came when I called the Jefferson GI team and got scolded by our favorite nurse Elizabeth, basically telling me that Hon's electrolytes problem is a result of me not doing the tube feeds correctly with the supplemental banana flakes, Imodium, and pancreatic enzymes and a higher dosage.  Since Hon can't tolerate the desired 100 ml/hr, we dialed it back to 40 ml/hr.  So he's not getting enough nutrients.  I'm supposed to increase the feed, I'm to give him enzyme pills during the night;  I'm to crush these pills.  She seems irritated that she's told me this before but I'm not getting it.  Maybe I'm not getting it because the rules keeps changing!  So I'm basically starving him.  But when I ask her how I'm supposed to administer the banana flakes - before, during or after the feeding tube - she says she'll have to check with the doctor.  Guess I'm not the only one who doesn't know!   We call a truce by deciding she's going to have the nutritionist - the one I never met the last 4 trips to Jefferson - call me when he/she talks with Hon.   All I need is for someone to write down my regiment - what to do and when to do it.   I'm very good at following instructions!  I go back into Hon's room feeling stupid, incompetent and overwhelmed.
Perky Nurse Lisa tells us that the low potassium probably contributed to Hon's wobbly walking because his muscles can't operate well.   And now he has fits of twitching and shaking that he can't control.  The low sodium contributed to the lightheadedness which probably caused him to lose his balance and his fall.  He's been complaining of dizziness since his Friday procedure.
We were excited when angel nurse Sandy stopped by to talk to Hon.  She is a calming presence that I need right now, pulling me out of pit that I'm digging for myself.  She agrees that I need someone to show me how to do the tube feedings with supplements.  I'm doing the best I can with the knowledge that I have.
Transport finally comes at 7:30 pm.  I retrieve my Berkshire blanket (transport actually has blankets and a pillow!)  Nurse Lisa gives a summary of Hon's stay today and then sends us off, wishing us good luck.
Jefferson Nurse says they are waiting for him and will try and rebuild his electrolytes tonight.   If all goes well, they still want to try the ERCP (drainage) on Thursday as an in-patient.
I come home to a very hungry and lonely Smokey, and 3 loads of laundry has a result of Hon freestyle draining this morning.   We'll see how things are tomorrow.  As nurse Lisa told us, "It's a good day when you wake up and you can stand on your feet!"

Day 68:  Monday, Jan 9
Monday morning - back to our hectic routine of getting dressed, skin care, meds, temperature checking, finger stick, making lunch and feeding Smokey who has really been acting out these past 2 days.  I think all of the activity of new people coming and going and his keen sense that something is wrong with our normally happy little family is causing him to be anxious and antsy.  I feel so bad that all I do is reprimand him, but he is just everywhere I don't want him to be.  I think it's just an attention-getting strategy but it's very unnerving for someone who is on her last nerve.
Around 11 am I text Hon to remind him to do his Lovenox injection.  No answer.  I try calling his cell phone.  Goes right to voice mail.  So I had to call neighbor Gary to drive over to do a wellness check on Hon.  He was ok; but his cell phone has died.  Given that we don't answer our house phone (because we get so many darn telemarketers) the cell phone is our only real connection.  Add that to the list - get cell phone repaired.
He's sitting up when I get home, but very quiet.  He only eats about 5 tablespoons of chicken rice soup and 1/4 of a popsicle.  Then I realize he has his stomach drain open, so everything he just ate is draining out into his bag.  He is losing focus.
I take everything out to the kitchen and come back to find him standing next to the sofa, tapping his stomach bag on the floor.  He seems to be having tremors.  When I ask him what he's trying to do, he responds, "I don't know."  I ask him if he wants to sit down.  He says yes, but tries to walk away from me.
I had bumped up his feed tube pump last night to 40 ml/hour, and this morning he was anxious that he had diarrhea.  The GI Practical Nurse had recommend Bananatrol (medical food supplement for people who don't tolerate feeding tubes) before the feeding.  But the instructions say to mix an entire packet with 120 ml  of water each day and administer immediately through his J tube.  I go out and look at how much is 120 ml - it's a lot.  Plus were have to do 30 ml of flush before and 30 ml flush again at the end.   So all total, that 180 ml of  fluid going in to him.  It's going to be tough considering he can't tolerate 40 ml of liquid feed.  When I explain it to him, he adamantly shakes his head that we're not doing that - he'll be so bloated!
As the days drag on, we are faced with more and more situations where we have to give up yet another part of the life we knew or plans that we have.   Today that feeling was particularly overwhelming.  Tears shed today, and I haven't been reduced to that for a few weeks.  But very time someone asks "How's Kenny?" or "What can we do for you?" I just want to scream, "Give us back our normal life!"
I am reminded of lyrics in a song sung by Christian artist Damaris Carbaugh called "Blessings":
What if my greatest disappointment, or the aching of this life,
Is the revealing of a greater thirst this world can’t satisfy?
What if trials of this life—the rain, the storms, the hardest nights
Are Your mercies in disguise?  
Lord, help me to see the blessings and not get caught up in the sadness, disappointments and feelings of inadequacy.  And show me how this trial will turn into something good.
 
Day 67:  Sunday, Jan 8
Hon was up early.  Unfortunately that wasn't exactly my plan and I tried to eek out another hour, but Smokey would have none of that.  So I drug myself out of bed and started back into the reality of my nursing duties.  Take Hon's temperature, do the finger stick to check his glucose;  put the lotion on his dry feet, change the dressings around his tube sites, catching up on laundry, repacking all the contest bins and storing them away for another year, complete contest paperwork, go the grocery store to get roasted chicken for dinner (Hon's request), unpack the groceries, make dinner, more laundry, set out Hon's clothes for tomorrow;  crush the meds in prep for our Monday morning marathon of to-do's and give Hon his antibiotic.
Hon spent most of the day napping.  Very little activity and less talkative as the day went on.  He says he feels fine, but he looks tired and drawn.  Not sure if the anesthesia is to blame for the lack of energy.
Thanks to the many supportive family and friends, I got through Farm Show.  Now the staging area switches to Fair Convention, and a whole new list of To Do's begins.  And more heartache and anxiety as reality sets in that most likely Hon won't be able to go to that either.


Day 66:  Saturday, Jan 7
While I was running the Chocolate Baking contests at the PA Farm Show, the back up team was watching out for Hon.  Family checked in on him in the morning and evening.  Fair friends at Farm Show stopped by frequently to ask about Hon's well-being.  Even Maintenance Guy J.R. missed him.  He and Hon had struck up a friendship - even though they only see each other once a year.  It was a bittersweet day - seeing old fair friends, talking with the excited contestants, watching families walking through the Farm Show, and being amazed by the volunteers who always give it their "all" to make sure the contests are a success.  All the hustle, bustle and high energy, and yet there was always this thread of sadness that wove through my thoughts as the day progressed...I kept turning around excepting to see him.  Hon would have setting the cakes on the tables;  Hon would have been helping with the display;  Hon would have delivered that cake to the Horse Barn;  Hon would have made sloppy joes for the volunteers;  Hon would have been moving tables, chairs and trash cans with J.R.  Even when we went out to eat, I found myself picking the menu items that Hon would have ordered, and I fall silent wondering if Hon and I will ever get to go out to dinner ever again.  Hon is just as much a part of this contest event as I am.  And he was missing out on this annual event that he looked forward to attending and catching up with everyone.  Even the contest emcee made a point to remember Hon before the final awards were announced.  When I went to leave at the end of the day, J.R. gave me a big hug and with tears in his eyes said, "Tell him I was asking about him - I am so sorry you have to go through this!"
Hon waited up for us to return from our long day of contestants, chocolate cakes, cookies/brownies/bars and cold!   As we carried box and box and bin after bin and bag after bag back into the Family Room, he asked us questions about how things went.   He didn't want to do any meds tonight since it was so late, so we both called it a night.  Looking forward to sleeping in late Sunday morning!

Day 65:  Friday, Jan 6
Hon's procedure went well and this time he didn't after to stay overnight at the hospital!!  God was the Protector and provided for a friend who scraped the snow off our drive and safe and quick travels for Hon's chauffeur on this first snowy day of 2017.  Hardest thing for me was to put him in another person's car and watch him pull away out the driveway.   But my trust was in God's promise that He goes before us and is working everything out.
The surgeon said they got a lot of gunk out of him again.  He has to back next Wednesday and do it all again.  His chauffeur got him home by 6 pm, followed by a visit from sister and brother-in-law.  Hon actually ate a half can of soup which was very encouraging to hear.  He even texted me with a fairly significant message about his day.  I called him and he says he feels pretty good, except for the sore throat from the intubation tube.

Day 64:  Thursday, Jan 5
Hon's vital signs were "perfect" this morning - temp 98.6 and glucose 120.
Visiting Nurse was here today.  I checked in with her around lunch time and asked for her "take" on how he's doing.  She expressed the same sentiments that I'm feeling....clinically he's ok - she said he gained 2 pounds which I don't know how that's even possible - but mentally she can see that this is starting to weigh him down, and rightfully so.   Whereas when we began this journey he had more fight in him, now he is on the edge of depression and the hope of feeling better is getting smaller.  We need some positives to happen to give some signs that the wave is turning in a good direction.
His food intake today was cereal, OJ and 1/2 cup of tomato soup.  We don't do the tube feeding tonight because Friday he has another endoscopy procedure down at Jefferson.  So he's happy that he doesn't have to sleep elevated tonight.  He goes to bed around 9 pm - said he didn't want to be in my way as I start the process of organizing all the stuff that has to go with me tomorrow to Harrisburg for the State Chocolate Baking Contest at the PA Farm Show.  Now my family room looks like a medical office and a staging area.  Pretty soon Smokey is going to have to rent a room somewhere else!   Before Hon goes to bed, he goes back to his secret cash stash and brings me out $200.  It's money for the shopping trip that he and our Oley friend Marie would do at Farm Show Saturday morning to purchase PA Preferred items for chocolate baking judges' gifts.  It's an activity that I think he always secretly looked forward to.  He and Marie would take a shopping cart and go to the PA Preferred vendor area to purchase all sorts of goodies.  They would have a blast, and always come back with more stuff than the gift bags could hold.  He puts the money in my hand and tells me "This is the money for Marie!"  Even with all his troubles and discomfort, he's still thinking about helping.  That's my Hon.
We have a plan of a chauffeur for the procedure down at Jefferson, a plan for evening meal/check-in and a plan for Saturday morning and evening check-in.  Now all we need is for this darn snow forecast to go away.  That will just complicate everything.   And things are complicated enough.

Day 63:  Wednesday, Jan 4
I got home around 6:30 pm and Hon was not in his usual places - sofa or recliner.  House was quiet and I realize he's back in bed taking a nap, which means our meds and dinner schedule is going to be all screwed up - again.  I go back to wake him up.  He's actually pretty coherent and is telling me all about his day.  He is so happy that Smokey has stuck like glue to him all day.  They even napped together.  We're actually having more conversation now than we've had in the past 2 days!  But he's slow in getting up.  I already have a load of laundry in washer, another in dryer, my Thurs lunch packed and rigatoni noodles cooking on the stove by the time he ventures out.  
Because of the late hour, I decide we're just going to do his meds in the morning, and just eat.  But same problem as last night.  Gave him his dinner and he sits there with his eyes closed and doesn't make any movement to actually start to eat.  It's like he's in slow motion.  Every once in a while he will open his eyes and ask a question or tell me something, but then goes back to lah-lah land.  When he does finally get the energy spurt to eat, it's cold and I have to re-heat.  His total food intake for the day was a small glass of OJ (probably only 4 ounces), 1/2 of an English muffin and 1-1/2 turkey meatballs and maybe a couple of rigatoni noodles.   He just refuses to push himself past the point of feeling full.
I crush all his meds tonight and have them ready for the morning.  I set his tube feed pump an extra 5 ml/hour.  Now we're up to 35.  The goal is 50.
In an attempt to minimize the growing list of To-Do's now for the morning, I go ahead and put out his clothes and pin up the hems of his lounge pants.  That means now we only have to get up, washed, dressed, lotion on feet, temperature check, glucose check, flush the J tube and inject the crushed meds.   His visiting nurse will be here around 9:30 am.
Our family room looks like a staging area with all the Farm Show baking contest supplies.  Final checklist is to get everyone organized for Friday and Saturday while I'm away.  Have to turn the reigns over for 2 days.  It's going to be tough for this gal who's used to being in control of everything. 
 

Day 62:  Tuesday, Jan 3
We were off to a great start this morning - up on time, getting all the checklist items done and I'm ready to walk out the door at 6:45 am!  Whoo Hoo!  Then I decide we should check Hon's glucose because his nurse stressed we should check at last 2 times a day while he's on the tube feed.  So here's our comic moment of the day...we follow all the instructions, stick his finger and test the droplet on the test strip.  The meter beeps and Hon looks at the meter and says, "That can't be right."  The meter is registering 651.  Now normally it's 120-130.  He seems coherent, talking sensibly and looks fine.  But his test score indicates he should be in a coma about now.  He says not to worry; we'll check it tonight.  I leave for work, but not before texting his visiting nurse because, yes, I worry.  It's a family trait.  She calls me back in about 5 minutes, telling me that 651 is dangerously high and we need to take Hon to the ER immediately.  I do a 180 and head back to the house to find Hon very annoyed - his nurse called him and told him I contacted her.  I explain that this could be serious and we need to treat it that way!  We re-test and it comes up 162.  Whew!  The nurse is no longer having a coronary and I feel relieved.  Later in the morning I figure out what happened...if you print 651 in digital numeric format (like you would see on a digital clock) and turn it upside down, it reads 159.  We had the meter upside down when we read it.  How embarrassing.
So now I'm going to be 15 minutes late for work.  As I'm driving (I took the truck today), the low tire pressure indicator comes on.  As Alexander said in the children's book, "It's going to be a terrible, horrible, no good, very bad day."
His GI nurse called to follow up today.  She is also concerned that he's not getting enough calories.  We have the tube feed on such a low dose that he's only getting about 1/4 of his calories each day, which is why he's losing so much weight.  She wants me to bump up the tube feed to eventually get to a rate of 50 ml/hour.  Right now we're only at 29 ml/hour, but we don't have the diarrhea.  Her suggestion is if the diarrhea comes back to include Banatrol - a high fiber supplement that manages diarrhea for people on tube feeds.  It gets mixed with water and given by syringe through the J tube.  But she is firm that we need to get more calories into him.  It's a battle that I'm losing.  How do you get someone to do something they don't want to do?
I was supposed to go to a service club meeting tonight, but work went overtime until 5:45 and something told me I should just go home.  Hon was on the sofa, wondering why I was home.  The routine to do his meds, wait the mandatory hour, eat dinner, hook up the tube feed - takes 2 hours.  If I go to my meeting, he'll be eating at 10 pm!  He is just a limp rag doll on the sofa.  Not talking, not watching TV...just laying there snoozing.  I have a hard time waking him up for dinner.  I give him his bowl of chicken and rice soup and it takes him 5 minutes to get from the couch to his chair, and then he tells me he feels sick to his stomach and isn't eating anything.  He goes to bed at 9 pm with no supper.  And all he ate today as 1/2 an English muffin and maybe 2 tablespoons of pears.  I am frustrated beyond words.  I try again to explain that he needs to eat more or stay on the tube feed longer.  I get no response;  he just closes his eyes and shuts me out.  I feel like he's slipping away.
I had a nightmare the other night.  I dreamt that Smokey was in a pond, and an alligator came along and tried to roll him under the water to drown him.  The alligator's large tail kept smacking the water and then it would roll on Smokey.  Smokey would go under and them come up meowing and scrambling to get to me.  I kept yelling "STOP!" to the alligator and reaching for Smokey, but the alligator just kept rolling Smokey back under again and again.  I woke up in a complete sweat, gasping for air and exhausted.   They say dreams reveal our deepest fears and this one was too real for me.



Day 61:  Monday, Jan 2
Last day of holiday.  Tomorrow is back to work for me.  So today was filled with visiting nurse, physical therapy, visitors, laundry and grocery shopping to set us up for the rest of this week and for me being out of town on Friday and Saturday.
Hon has been tolerating the liquid feed at the very low drip rate, but it's not enough to give him the calories he needs.  So tonight we bumped it up a couple of ml/hour.  He only ate peaches for breakfast, no lunch, and a petite serving of broiled flounder, 1/4 of a baked potato and 3 asparagus stems.   His plate's portion size looks like what you'd get at one of those really fancy restaurants and would pay a fortune for!
He did walk the driveway 2 times and his therapist worked on standing and arm exercises.  But he didn't move around too much after that.  He continues to be very quiet and withdrawn.  He was in bed by 9 pm.
Tomorrow we are back to the frantic schedule of up at 5:30 am, and trying to do dressing, meds, lunch prep and glucose testing before I leave at 7 am.  I am so grateful we had this time between Christmas and New Year's to have a more relaxed schedule that wasn't stressful for either one of us.  Tomorrow is going to be rough getting back to the real schedule.



Day 60:  Sunday, Jan 1, 2017 - New Year's Day
Can't believe we've begun a new year, and we're still in pancreatitis pandemonium.  It would have been so nice to start the new year and leave that all behind, but that is not the hand we were dealt.  God must have a plan that we have more to learn!
Hon was feeling a little adventurous today and decided he was going to do 2 laps up to the mailbox and back.  He didn't come back and didn't come back, and now I'm just sure he's collapsed in the driveway and here I am sitting on the couch watching TV!  A quick glance out the window revealed that he was still walking, just very slowly.  When he finally came back in, he tells me he walked the driveway 3 times!  Considering we already had a shopping excursion planned today, I was concerned he overdid.  Sure enough, we got to our first store and he tells me he's tired.  Since I still needed to shop, I took him back to the car and he reclined in the passenger seat and read his Sunday newspaper.  Good thing the outside temps were above average today and the sun was warm.
We try and identify a comic moment every day.  Today's happened in the store.  Suddenly Hon realizes that his G tube (the drain from his stomach) has become separated from the drainage bag.  Thank goodness he had the tube clamped, or he would have been draining all over the store floor.  So there we are in the middle of the aisle frantically trying to reconnect his tube to his bag.  Hon's got his tshirt pulled up, exposing his tube sites and bandages - it's surprising how vanity goes out the window when you're dealing with a medical malfunction.
As soon as we got home (after 4 pm), he wants to take a nap which really screws up our schedule for meds and dinner and bedtime.   So we flush his J tube and inject the crushed meds before nap time.  He doesn't get up until 7 pm and then of course is really groggy - if I hadn't woken him up, he would have slept right through and probably been up at 3 am.  He tells me tonight that he hurts all over - all his joints and his back - and that it's been going on for weeks.  Not sure if that's from too much inactivity or the meds.  And not sure why he's just now revealing this!  He did eat an egg sandwich for breakfast and then turkey meatballs and rigatoni noodles for dinner. But couldn't talk him into any lunch.  We are definitely not doing well with getting calories into him, and because we reduced the rate of the liquid feed drip at night to avoid the diarrhea, we aren't even getting 500 calories overnight.  His weight drops 1 pound a day. 

Day 59:  Saturday, Dec 31 - New Year's Eve
People are flooding into Times Square to watch the dropping of the ball.  Others are celebrating at the homes of family or friends.  But here on Ebelhare Road, we are having a very low key start to 2017.  Just me and Smokey - and a glass of blush wine!
Not a banner day for Hon today.  He was pretty quiet and moved at grandpa pace.  Not too perky and it took some nudging to get him to do his walking.  After breakfast of 1 pancake, we did go on a short outing to Staples and to Wawa.  But then back home for some tomato soup and fruit, and then he was napping by 3:30 pm.  We did try to have something special for New Year's Eve - crabcake, noodles and green beans, along with non-alcoholic strawberry daiquiris (well, for me anyway!)  Hon ate his plate pretty quick, so I guess it was good!  But he was sleeping in his recliner by 9 pm, so after a cocktail of meds, we hooked him up to the liquid feed, said "Happy New Year!" and he told me to go watch the ball!
2016 was certainly a roller coaster year.  For every blessing or honor, there was always a disappointment or sad time waiting in the wings.  And while it would have been really easy to succumb to resentment and bitterness, instead we learned to trust, have faith and ask for help   I firmly believe that we go through valleys because we will be called upon to help someone else, and unless we experience the hurt, pain and sadness, we cannot be a comfort to another.   And so we look ahead to this new year with anticipation on how God is going to use us to glorify His name.
"We have troubles all around us, but we are not defeated.  We do not know what to do, but we do not give up the hope of living.  We are persecuted, but God does not leave us.  We are hurt sometimes, but we are not destroyed."  2 Corinthians 4:8-9

Day 58:  Friday, Dec 30
Got the call at 12:00 noon from Dr. Murphy that Hon was cleared for takeoff.  Chest xray was clear and no more fever through the night.  The only excitement was that Hon got an upgrade to a single occupancy room after his roommate in Room 1020 turned out to be very distracting with his snoring and coughing.
Quickest hotel checkout we've had yet.  It took longer for me to fetch the car from valet parking and make my way around 2 city blocks to be able to pick him up at the front door.  Center City was a mass of people and traffic as we eeked our way back the Expressway.  We didn't get home until after 4 pm.  We both took a nap!
Hon was pretty drowsy and had a hard time staying awake.  I did make him get up and he finally got that hot turkey sandwich and oven fries.
Thank you to all of the volunteers who called/texted/emailed with offers to take Hon to his next procedure appointment on Fri Jan 7 while I head to Harrisburg to get ready for the Chocolate Baking contests.  We are very blessed to have so many caring family and friends.  

Day 57:  Thursday, Dec 29
Well today didn't go according to plan.  We go in for an outpatient procedure and Hon ends up getting admitted - again. 
We made the trek east on the Schuylkill Expressway in the cold rain.  Hon was silent the whole ride.
As we staged in the Waiting Room, he said he was so tired and joked that at least he'd get a good nap while under anesthesia!  He even complained that he was hungry.  We planned our dinner to be hot turkey sandwich with oven fries.  It gives him something to look forward to.  I felt his forehead and he feels very warm.  Perhaps it's because we walked so far and he's been sitting with his coat on.  He went in to prep for the procedure around 1:45. 
I broke out of the hospital shell and actually ventured out into Center City.  I dropped off some mail at the historic Post Office next to the Court House, taking in the wonderful marble and stone architecture.  I navigated my way to Paulie's Pizza on 11th Street where I scarfed down a slice of pepperoni and a slice of sausage pizza while watching the eclectic customer base.  And I found my way back to Jefferson Hospital by 3:30 pm in hopes that Hon was out of his 90-minute outpatient procedure.
By 4:30 pm, no word.  And other patients were getting annoyed in the waiting room because procedures were running behind schedule.  I started to get a pit in my stomach that perhaps Hon was the reason.
I ventured down to the Hospital's Atrium - fancy name for cafeteria.  The last thing Hon made me promise was that I would have a cold bottle of water for him for the ride home.  Why didn't we think to bring our own water instead of paying $3.25 in the fancy cafeteria?
RN Eileen comes to fetch me to take me to the Recovery Waiting Room.  She breaks the bad news that Hon has a fever and that he might have to be admitted for observation.  My heart sinks.  I only have to wait minutes and RN Eileen is back with the announcement - his temp is rising and that has secured him overnight accommodations.   She lets me hang out in Recovery for Hon's mandatory 1 hour holding period.
His temp going in to the procedure was 99.3.  It was 100 when he came out. Now it's at 100.3.  He's so close to the brink as they consider 100.4 to be "fever".  

The very serious surgeon/GI doctor stops by and says they took a lot of "gunk" out of Hon, and that they have to be more aggressive in removing the fluid and dead cyst tissue, so he need will another endoscopy next week.  Ugh.  We thought we had dodged the bullet of any procedures next week with Farm Show commitments coming up.  Dr. Serious says Hon can go home.  RN Eileen argues that he already was put in for a room because of his fever.  Then he looks at me and reprimand, "He's been having low grade fevers at home??  This is the kind of thing you need to tell me!"  I don't even get a chance to explain to Dr. Serious that no, he hasn't been having low grade fevers, I've been checking his temperature every day since I became the proud owner of 3-thermometers-no-waiting, and his temps have been good all week - even the visiting nurse took it yesterday and it was good.   Dr. Serious bows to RN Eileen's decision and says yes he has to stay for observation and leaves abruptly.  RN Eileen tells me to take a deep breath.

Next thing I look and Hon is surrounded by RNs.  They are taking blood, checking vitals, filling out paperwork. His rising temperature is now a concern and they want to test his blood to see if there is an infection. I tell him that this is a heck of way to meet women.  He's joking with them, asking for a cheeseburger, a beer, and water.  They all find him very amusing and take great delight in telling him, "no, no and no!"   So when Hon poses his next request for a urinal, they start to say "no" again, until they realize that he's serious about this one.  He looks at me and says, "Guess I won't be getting that hot turkey sandwich and oven fries."  Stick a dagger in my heart. 
Every time a doctor comes by to check on Hon, we ask if they were actually in the procedure and can tell us what happened.  We finally hit pay dirt when Dr. Murphy comes by.  She's a resident with the Internal Medicine team that's working with Hon's GI team.  She's a breath of fresh air.  She remembers Hon and is sincerely sorry to see him back.  She takes the time to explain what happened today.  Actually the GI procedure went really well.  Hon's pseudocyst is so large that it's occupying the majority of his abdominal area.  They flushed and drained out a lot of stuff, and put in another stent to try and shrink the cyst.  But as the anesthesiologist was removing the breathing tube, some of the gunk went into Hon's  lungs.  So they they had to try and suction it out.  But now there was a risk that he could develop aspirated pneumonia.  And so the overnight stay is precautionary because they don't want to send him home and we end up back in the ER.  She orders a chest xray, antibiotic IVs and the liquid feed.  But she assures me this will be the shortest hospital stay ever.  Hon is defeated.  Thank goodness for Dr. Murphy who will not let him dwell on the negative and talks it through with him in a very caring way.  She's an angel.  Dr. Serious should be taking lessons from her.

Hon predicts that he will end up in a double occupancy hospital room and that his roommate will be a snorer.  He's right on both counts.  But we are blessed with a very competent (and cute) RN named Tim who also has a sincere, caring spirit.  He even orders Hon a meal.  I leave at 7:45 to walk another block to fetch my car and head west.   Home is very quiet and Smokey seems to know something's wrong.  He spends most of the night on my lap.  His demeanor mirrors how we all feel tonight.  Now to figure out how to get Hon to his Friday 10:30 am endoscopy and me to Harrisburg by 12 noon the same day.   As Scarlett O'Hara said, "I'll think about that tomorrow!"

Day 56:  Wednesday, Dec 28
I now better understand what it's like to be an at-home-mom.  Your day is fractured with small episodes of multiple to-do's.  It goes fast, but at the end, you realize you didn't really do anything except what was needed for another person's care and well-being.  And you suffering from "mommy brain"... example, I left the garage door open all night with the car parked in the driveway, unlocked.  Thank goodness we live in an area where one sees more raccoons, squirrels and deer than people.
Our day goes by quickly. Hon get himself up at 6 am and is cleaned up and dressed before 9 am when his home health nurse Victoria visits.  She takes his vital signs (all good - BP is up), weighs him (he lost 2 more pounds), changes his surgical sites' dressings, gives his blood thinner injection and teaches us how to work the finger-stick glucose meter.  So now he will have bruises on his belly from the blood thinner injections and bruises on his fingers  from the glucose check.
Our outing today consists of going to PetSmart to get Smokey more cat food and cat litter, and to the Drug Store to pick up more scripts.  Grocery carts become our new best friend...they allow Hon to participate in the shopping and give him the support he needs while he walks.  I try to do some computer work after lunch, but again we have visitors stopping in, phone calls, lunch snack to prepare, and another trip back to the garage to fetch back our truck now donning its winter "sneakers".  Another mommy brain moment...when I took Hon back into the house after our outing, I left 2 doors of the car wide open for over an hour.  Think I may be trying out that new Halo car charger I just bought on QVC.
Hon decides that he wants turkey meatballs and rigatoni for dinner - minus the sauce for him.  After doing the crush/flush/inject meds routine, making the meatballs and homemade sauce, it's 7:30 pm and Hon is lights out around 9 pm.  Where did the day go?
Tomorrow we head back down to Jefferson for another endoscopy.  I haven't made the trip down the expressway for almost a week.  It's been nice to not have to.

Day 55:  Tuesday, Dec 27
I think I have a Recovery Overachiever on my hands.  Whereas I was wishing for Hon to be more active, now I have the opposite problem...he's ready to take on the world.   Today he's up at 7 am.  He's already got the day planned out.  So did I, but somehow his schedule starts to gain momentum.  After his planned breakfast of scrambled eggs and toast with jam, we decide rather than wait for the newspaper to be delivered by brother Gerrit, we're going to try an outing out to Wawa to get our own newspaper.  Then he decides that we're also stopping by the garage to make an appointment to have his truck's brakes checked and winter tire/rims put on.  That requires that "we" load the tires into the truck from our shed.  Which requires that "we" move the zero turn mower to get to the tires.  Hon decides that fair friend/neighbor Gary can come over and help "us".  Hmmm.
I get some good news.  An offer to borrow a tread mill from sister Joanna, and verification that Jefferson can push Hon's stent check endoscopy up to this week.  We need to be at Jefferson this Thursday for a 2 pm procedure where they will go in and clean/flush the stent that is draining from the cyst to his stomach.  The purpose is to remove any necrotizing (dead) tissue/gunk which will prevent the cyst from re-filling with fluid.  It's supposed to be an out-patient procedure, but we should be prepared that he might have to stay overnight, depending on how it goes and what they find.   The bad news...he will have to keep the G-J tubes for another 2 months.  They want to make sure he can fully tolerate 3-4 regular-size meals before they will remove the tubes.  Hon isn't happy with that part of the news, but he has to understand that it's easier to leave them in as the back-up plan rather than have them removed and possibly suffer stomach bloating/discomfort or need liquid feeding and not have them there.

We head out to Wawa and run into one of Hon's "coffee clatch" buddies Richie in the parking lot.  They chat while I go in to get the newspaper and get a much needed encouraging hug from fire house friend Rose.  Then we head to the garage where Hon is warmly greeted by garage mates Matt and Tim (and garage kitty "Stickie" who apparently has been a big fan of Hon and his bag of cat food since Stickie was a kitten).  Next stop on the Hon Recovery Tour is Ridge Fire Co. where we find another "coffee clatch" buddy Rich.  He is gracious to offer to be our backup driveway snow plower.  I've learned to a lot of things these past 2 months, but hooking up a plow onto an F250 truck and plowing snow is not something I'm signing up for.

We had a nice visit with my mom in the afternoon at our house - the first time she got to meet Smokey who does a great job of showing off his many play skills.  Then friend/neighbor Gary comes over and we start the dance of moving around vehicles and loading tires. Before I can say anything, Hon is out the door, in the shed and on the zero turn mower to move it out of the shed.  I'm the protective mother fussing that he's doing too much.  I relegate him to Supervisor mode only and Gary takes care of loading the tires, putting the zero turn mower back in the shed.  After I get home, Hon is up and ready to walk up to the mailbox.  We run into neighbors Pat and Tom who wondered why our comings and goings haven't been on routine.  We tell the Cliff Notes version of our story and head back into the house.  After a dinner of chicken noodle soup and crackers, Hon is ready for bed.  A lot of fresh air and activity today has done the trick.   Maybe tomorrow I'll get to work on my schedule.

Day 54:  Monday, Dec 26
Rather busy day for Hon.  We are faithfully following the "get up and move every 2 hours" rule set by Health Care Nurse Susan yesterday.  Hon did indoor laps for 6 minutes at 10 am.  His Physical Therapist Lorraine stopped by at 12 noon and he did another 6 minutes of indoor laps plus some balance exercises - we need to work on those!  Then we took a walk up to the mailbox at 1:30 pm and again at 3:30 pm - Hon didn't even need to pause to rest today!  In between brother George stopped for a visit and brought egg custard made by sister Joanna.   The nurse told us this was a meal packed with protein and nutrients.  So this will be good for his diet.
Vitals today:
Weight = 158  (Start weight was 205)
Temp = 98.3
BP = 122/68  (after the indoor laps = 140/72)
Pulse = 76

PT is recommending that we stick with doing at-home exercises/walking rather than expose Hon to a gym or physical therapy center where germs could aggravate his pancreatitis by inviting infection into his system.  With the winter coming up, getting motivated to do indoor therapy will be challenging.
Food intake:  peaches, strawberries, shredded chicken, 1/4 piece of bread, turkey, mashed potatoes and green beans.
Best Quote of the Day:  "You look good for as bad as you look on paper!"  Home Health Care nurse's assessment when she first saw Hon.  After reading his charts, she expected the worse.  She said the amount of stress on Hon's body is the same as if he had been hit by a truck.  On the outside he looks pretty good, but on the inside his organs have undergone an extreme amount of stress.  She isn't the first one to comment on how they can't believe how bad his pancreatitis is.
At the recommendation of the home health care nurse, we're back on the liquid feed tonight.  We've dialed it back to 25 ml/hour.  Keeping fingers crossed.  If this doesn't work tonight, "Fred" the IV pole and his merry band of liquid feed cans may be finding a new home elsewhere.

Day 53:  Sunday, Dec 25 - Christmas Day
The greatest gift we can receive is God's love.  The greatest gift we can give one another is our love.  On this very holy day, Hon and I are truly thankful for the love and blessings we have received through this very difficult year.
I got my Christmas Miracle.  Hon got himself up today.  Smokey and I treated him to a foot bath massage and pedicure.  I think Smokey wanted a foot bath, too. 

Hon ate one small pancake for breakfast and visited with brother Gerrit in the morning.  Gerrit alerted us that there was a pile of mail laying at our unused front door.  So Hon was amazed at more Anniversary/Birthday/Christmas/Get Well cards to read!  We apologize for not acknowledging these earlier;  we need to get that mailman on the same page!
Hon snacked on some peaches.  Later his visiting nurse Susan came to assess him.  She was very helpful and gave us some insightful tips and advice that renewed our commitment to restore Hon back to health - not necessarily by more pills - but by natural activities such as being up and walking every 2 hours, deep breathing exercises to aerate the lungs and stimulate the lymph nodes, and good nutrition.  We are inspired and Hon is agreeable to my idea that we take a walk up to the mailbox because we don't want the mailman pulling another fast one on us.  If you've been to our house, you know that's a fairly long walk.  And uphill.  Hon needed a couple of rest breaks, but he made it to the mailbox, which was full of more greeting cards.  His mood is more upbeat and he already seems to have more energy.  He even asks for more peaches.  So thankful for visiting nurse Susan's pep talk!
Sister Joanna stops by next with a Christmas poinsettia and stays to visit.  Hon enjoys catching up on the latest with her, and again my encouragement is renewed to see him engaged and more alert than yesterday.
We decide to tackle the meds through the feeding tube - we do much better this time with the crushing/flushing/injecting/flushing routine - I'm not sweating this time.
I determined that we were having the closest thing to a Christmas dinner - as much as possible considering our circumstances. 

I make Hon a small plate of roasted turkey deli slices, homemade mashed potatoes, green beans and cranberry.  Hon did a few laps around the house while I prepared our quasi-Christmas dinner.  Granted, the total quantity on his plate was probably less than 1 cup, but he ate it all - what a gift to see!   The evening closed with another visit from brother Gerrit with leftovers from his family's dinner, another greeting card and, oh, a bottle of wine . . . just in case I need some "me" time to just chill and relax. 
We make the decision to not hook up to the liquid feed tonight.  Hon has had an encouraging day, but as soon as I press the RUN button on that pump, we're just setting him up for a long night punctuated with fits of diarrhea.  Why spoil a good thing.   Merry Christmas, Hon!  


Day 52:  Saturday, Dec 24 - Christmas Eve
Hon had a good night mostly because he wasn't tethered to the feeding tube, so no multiple trips to the bathroom during the night!  Most of my day was spent getting re-organized - picking up new prescriptions, grocery shopping for the low-fat diet, studying the med list, re-calibrating the feed pump and laundry.  Hon spent all day in his recliner and on the sofa.  Smokey was just a nudge all day - not sure what to get into and seeming to get into all the wrong things.  So we hung out watching addictive sappy Christmas movies on the Hallmark Channel.   He read the cards that have arrived over the last few days, got a phone call from fair friend Kevin, and was grateful to neighbor friends Russ and Mary Lou for dropping off lemon bars. 

Vital signs today - Temp ranged between 95.8 and 97.8.  Weight:  159 (down over 40 pounds).
He had 1/2 c of oatmeal, small chunks of watermelon, a few apple slices, and a 1/2 of a Popsicle. 
We didn't try the glucose meter today - can't have all the excitement in one day.

Hon was very quiet today, and slept most of the afternoon.  I am concerned that he exhibited moments of confusion today, such as he couldn't remember the name of the hospital where he's spent over 2 weeks.  His voice is very raspy and he looks hopeless.  Suddenly he seems so frail and dependent.  I still can't wrap my head around the fact that we are in this reality.  We resumed the tube feed tonight, and within 4 hours of putting him to bed, the diarrhea is back.  And we already dialed down the dosage from the original 100 ml/hr to 50.  I just don't know what we're doing wrong.
Giving him his meds via the feeding tube was a little challenging for me - had to keep re-reading my notes and still didn't get it all right.  I think I may have flooded him with too many syringe flushes.  I made notes so that hopefully tomorrow will go better.

My mother always said that Christmas Eve was the magical time when the animals could talk - a Christmas Miracle.  We could really use a miracle now.  So far, Smokey hasn't uttered any words. He's sound asleep in his rocking chair.  But I'm sure he'd say, "Please help my daddy!"      
 

Day 51: - Friday, Dec 23 - HAPPY BIRTHDAY HON!  
Well, at least Jefferson's communication skills are consistent - they consistently aren't good at it.  When I called the floor nurse this morning, the Doctors hadn't done rounds yet, so no one knew anything - again.  So I left work around 1 pm and just headed down.  When I got there, Hon was anxious to get the show on the road and be discharged.  The dr told him around 11 am that they would call me to come pick him up.   Well, no one called.  Good thing I had an inkling to head down on my own.  He had been laying there waiting for me for over 3 hours.   There was no meeting of the minds yesterday, and he has yet to meet the Nutritionist.  He didn't know many details and so it's hard to decipher what the discharge plan is.  If it was up to Hon, he just wants to get dressed and leave!  I have to repeatedly remind him that I need to know the plan if I'm going to take care of him.   So I call his GI nurse and ask what is the plan?  She sounds shocked as she says, "Well he's supposed to be going home!  Didn't anyone come talk to you?"  Again, breakdown in communication.  She pages the Resident to come talk to us.
Meanwhile I call the medical supplies place.  They have the balance of Hon's liquid feed to deliver.  Because of the holiday, we will get it on Wednesday.  I don't have enough liquid feed on hand to make it until the shipment comes on Wednesday.  Rep Andrew puts me on hold several times and finally comes back with an announcement that he was able to work it out that we can get the shipment tomorrow.  Hallelujah.  Two points for Andrew!
We meet Dr. Drew Kolter - the resident MD.  He's very young.  I think I probably could be his mother.  He goes over all the information and answers my list of questions.  1 point for Dr. Drew.  He writes more prescriptions and we are cleared for takeoff.  They want Hon to be on the liquid feed all day instead of just at night, at a slower dosage to avoid the diarrhea.  Dr. Drew doesn't earn any extra points for this plan.   He explains we follow the "strict low fat diet" - but the Nutritionist from Jefferson isn't available for a few hours to come talk to us.  Hon is emphatically shaking his head "no".  So Young Dr Drew prints us a cheat sheet of food options and tells us to call the GI office on Monday to talk with the Nutritionist.  He earns another point for the handout, but the Nutritionist gets no points.  These Nutritionists are like Oz...everyone talks about them, they seem to have a lot of power over what happens to you in the hospital, but no one actually ever sees them!
The good news - miraculously they may be able to move up Hon's next endo procedure to next week instead of the 1st week of January!  This would be a huge help to us.  We give young Dr. Drew an extra point for giving us that glimmer of hope.
Hon said that he got really filled up with the liquid feed overnight and he told the nurse to turn off the pump.   She said no and he told her in no uncertain terms that either she did it, or he would.  I think it's time we get out of Dodge...he's had enough of the hospital scene and is no longer charming.   We meet his day nurse on the way out - her name is Treasure - she was his nurse a couple of days ago.  She was so kind to stop and take the time to wish him well.  Like Hon said, some of the nurses were really caring and nice, others (especially the one last night) didn't earn any points with him..
It's 4 pm as we saddle up and point our wagon towards the west, back on the Schuylkill Expressway.  I'm dreading the traffic, but thankfully we only have a few backups...otherwise it's smooth sailing.  He was pretty talkative and alert in the hospital, but by the time we get home, he's completely wiped out and goes right to his recliner, then the sofa, and finally declares he's going to bed.  He doesn't want to be bothered with any meds (good thing because they didn't mark down what meds he already had at the hospital so I have no idea what's left to give tonight) or the liquid feed.  So we have to get back on schedule tomorrow.   Hopefully a good night's sleep is all he needs.  He looks so frail, the muscles in his legs and arms are atrophied.  His face is drawn.
Thanks to the kindness of friends and family, I now own three (3) thermometers!! So now I can take his temperature in every room!  Tonight it's 97.8.  At least it's not a fever.  And the dr gave us a prescription for liquid Tylenol since they explained that he may often have a low-grade fever since he has 3 foreign items (the Three Stents - Moe, Larry, and Curly) in his body, and the body is going to try and fight them off since they aren't supposed to be there.
So we spent our 12/20 anniversary in hospital room 5236 watching the Food Network.  Tonight we spend Hon's 71st birthday driving the Expressway and he's in bed by 7:30 pm.   We've got to stop living it up like this.  I don't think we can stand the pace!   But at least he's home.  My Nurse Jane Fuzzy Wuzzy role resumes bright and early tomorrow am.
Happy Birthday Hon - Kenneth Harry Dobson, born 12/23/1945 to Joseph and Johanna P. Dobson.  Baptized on January 26, 1946 at Saint Peter's Church in Phoenixville, PA.   Thanks to sister Joanna we have a few photos of young Hon, plus his baptism card on which I found this Birthday Prayer that is very appropriate for today..."Watch over "Hon", O Lord, as his days increase;  bless and guide him wherever he may be, keeping him unspotted from the world.  Strengthen him when he stands; comfort him when discouraged or sorrowful;  raise him up if he falls; and in his heart may thy peace which passes understanding abide all the days of his life."
Check out the photos.  The ornery-looking one is Hon.  Some things never change.

Hon is on far left - with the ornery look!

Practicing his "police" look!

Hon on the right

 
Day 50 - Thursday, Dec 22 - Waited all morning for the call from the hospital to update me on the decisions from the "meeting" that was to occur around 10 am with the GI team, nurses and dietitian.  By 1 pm, still no call.  So I call - first the GI RN.  Usually she's my go-to person, but today she really couldn't tell me much.  She hadn't been to see Hon and can only tell me what she reads on the computer.  She is switching over many of his medications to a liquid form so we can inject into the J tube instead of crushing/mixing and running the risk of that mixture clogging the tube.  And she's got the Research Pharmacy (really?  who knew there was a pharmacy that just does research on drugs??) checking into which of the remaining meds we can crush.  She also doesn't know if the dietitian as changed the liquid feed formula to something that Hon can tolerate.  Next call is to the floor nurse - she can't really tell me much.  She knows that they had to stop the tube feed again overnight because Hon was feeling bloated.  She can't tell me if there was a meeting at 10 am ...she didn't get to work until 11 am.  And Hon is still on clear liquids even though he was promised he could start soft foods today.  So the only thing I get out of 20 minutes of phone calls is that I don't know any more now than I did at 8 pm when I left him last night.  But, he's still scheduled for discharge on Friday, even though nobody can assure me we have a plan in place.  Nothing seems to be going right - again.
But there were some blessings today.  Our HR manager at work took the time to sit and talk with me today for about 30 minutes.  He went through a serious operation and had a lot of recovery time, much like Hon.  Not only did he offer practical advice, but he could relate to many of the things Hon is going through because he went through similar stuff.  Just knowing that someone "gets" what you're up against makes the stings that happen all day seem a little less painful.
Next blessing - my fair friend "Doc" (veterinarian, that is!) calls to check on Hon and me.  He lives all the way up in Tioga County and has a very busy large-animal vet schedule, but yet he took the time to call and check in.  His gentle voice is calming.
Next blessing - my Niece/Nurse Jess surprised me with a gift this evening.  It included something to warm my hands, warm my tummy and warm my troubled spirit:  gloves, artichoke/spinach warm dip mix and a book called God's Promises for Every Day.   I found one of my favorite verses under the Chapter called "What To Do When Nothing Seems To Be Going Right".  It brings me peace and a renewed strength to handle whatever comes tomorrow.

 
Day 49:  Wednesday, Dec 21 - Phone call this morning to the Nurses Station on 5NorthEast - Hon's G tube clogged up again last night causing more pain.  This is the 2nd time this tube has clogged in the same day.  Nurse has turned off the tube feed and the GI team has been called in. Discharge planned
for today has been canceled.
Next call is to the GI Nurse Practitioner to find out what is going on?   She is very apologetic that Hon is having this discomfort.  His GI doctor went to 5NorthEast floor and rattled some cages because the nurses are still crushing his meds and injecting into the J tube!  I warned them that his Dr's office didn't want that to happen because it can clog the tubes, but they have to follow the written orders.  Turns out there was a miscommunication - the Resident assumed that Hon had the G-J tube because he had a blockage and couldn't take in anything mouth.  But that's not the case with Hon...he's allowed to drink;  he's clear liquids.  So Resident wrote the wrong orders.  The GI doctor goes as far as telling Hon, "If they try to inject anything into your tubes, you tell them 'NO'!"  Now they are not sure if the tubes are blocked inside him because of clumps of medication!   So the GI team is now tracking down this Resident and setting her straight.  They also talked to Hon's nurses to get everyone straight.  I'm told, "We're a big hospital with a big network and sometimes everyone isn't on the same page."  That's not very reassuring.
My plan to get on the road earlier doesn't really work out, and so it's the same 15 mph drive for 1.5 hours as we all trudge slowly towards Central Philadelphia.  At least tonight there was some excitement around Boathouse Row when a Philadelphia Ladder Truck and Pumper try to barrel their way through 3 lanes of bumper-to-bumper traffic.  If that doesn't get your adrenaline pumping, there's something wrong with you!    But it was all better when I walked into Hon's hospital room to see him sitting up in bed, all the lights on, TV on (Food Network, of course....poor man can't eat anything, so he's living vicariously by watching cooking shows!) and with a tray of clear liquids in front of him!  Hooray!   He read the newspaper from front to back. He sat out in the recliner for a few hours.  He took a walk up and down the hall.  And he asked for regular food!  He is chatting away;  telling me about his day, about the construction work that is happening on the floor, about the dr visits, the nurses, etc.  His eyes are clear, skin color good, and all vital signs are normal - no more fever!   Tomorrow the GI Team is having a meeting of the minds in Hon's room with special guest appearance by the Dietitian.  It's all hands on deck to figure out why the tube was clogging and what is the best diet plan for him when he goes home.  He will also get "soft foods" to try tomorrow.  He's so sick of the same menu for every meal - apple juice, water ice, jello and iced tea.  He wants his steak and garlic mashed potatoes! 
Right now they are estimating earliest discharge will be Friday December 23...which is PERFECT because that's Hon's birthday.  While he's a little disappointed that it means 2 more nights in hospital, I'm ok with it.  The other 3 times he was discharged, I thought it was too early - he just needed that extra day to be really OK to go home.   I am pleased that they finally realized that they need to get this right before they send him home.
We lower the room lights and just have the glow from the TV as we watch the end of "Chopped" on the Food Network.  "Oooh...mood lighting," I say.  "You're a great date!"  To which Hon replies, "I haven't been a good date for the past 7 weeks!"  Little stinker - how does he know that this is day 49?  That mind is always working!!

Day 48:  Tuesday, Dec 20 - On this night, 30 years ago, Hon and I were at the Phoenixville Country Club having chicken cordon bleu, drinking champagne, eating shrimp cocktail and enjoying our guests at our wedding reception.  Tonight Hon and I are in room 5236 in the Gibbons Building at Jefferson University Hospital drinking ice water and apple juice and watching his stomach tube.
He had a good start on the day - sitting up in his recliner by 9 am and even asked for something to eat, so they added clear liquids to his diet.  His bilirubin (liver) count dropped by 3 points.  The GI team is encouraged that he's doing good.
But by the time I arrived at 6:30 pm, he had belly pain because his G tube was blocked and was very sleepy because they started him back on antibiotics - he may still have an infection.  We did get some answers from yesterday's questions:
1.  What procedures did they do? Two (2)
a)  They had to replace the bile duct stent.  The plastic one they inserted on 12/9 had dislodged and fell out!  So the bile duct had narrowed and was obstructed again, causing the bile to back up into his liver, hence the jaundice.  Now he has (2) plastic stents in place to keep that bile duct open.
b)  They inserted a metal temporary stent that goes from the cyst (they call it a fluid collection) to his stomach.  So the cyst is draining internally.

2.  How many cysts were drained?  One (1)

3.  When can the feeding tube come out?  He will need that for 4-6 more weeks.  Not that he will need to take in food that way, but they want to leave it in place as a "safety check" because he will need some more endoscopy procedures, and one of the side effects is those procedures can bring on the pancreatitis.   So they want to have a back up plan.

4.  When can he go back to regular food?  He's allowed to have clear liquids, but they still have him on the tube feed.

5.  What is the anticipated discharge date?  They plan to discharge tomorrow, despite the fact that his temp was 99.5 and his experiencing fatigue and discomfort

I had such high hopes for today after I heard that he such had a good morning.  But then more meds, pain and frustration dampened the hope.  What was really hard was that the doctors didn't tell him all the information and I had to be the one to break the news - that he'll need at least 2 more ERCP scopes in the upcoming months;  he has to have the G-J tube for 4-6 weeks;  that the ERCP scopes can bring on pancreatitis.  The nurses can't tell us anything about the additional blood work that they did today because it takes 3 days to get culture results back.  The doctors only spent about 5 minutes with him today - just stood in the doorway - didn't even come in to the room.  The dietitian still hasn't showed up.  And the icing on the wedding cake?  They are back to telling me that I have to crush and inject all his meds when we get home.  And so the mood wasn't very festive tonight in room 5236.

I'm so tired of taking hospital photos.  I'm so tired of conflicting patient care advice.  I'm so tired of watching Hon lose weight and muscle tone (down to 162 lbs).  So tonight I choose to look back at some happier times with Hon on December 20, 1986.  The vows were "for better or worse, for richer or poorer, in sickness and in health."  Tonight I choose better, richer and health.    Happy Anniversary Hon - pass the apple juice.

Day 47:  Monday, Dec. 19 - "Ding Dong the Wicked Cyst is Dead"!  Success today!  Despite the fact that Hon had to develop a fever that put him back in Jefferson Hospital, it put us on the fast track to getting a new CT scan and getting his GI team to finally schedule the endoscopy and drain the dreaded cyst.  All the stars were in line and God took a "set back" and "set us up" for success today! While I wasn't too pleased with the poor communication with me throughout the day (he went to his procedure and they never called to tell me), I was happy that the two doctors who did the feeding tube and liver bile duct procedures last Thursday and Friday were both there today.  Hon went in around 12:45 and was in recovery by 3:45.  It took him longer to recovery because he had some breathing problems, but by the time he got back to his hospital room at 6:30 pm, the only thing he had was fatigue and a headache.   They unfortunately left the feeding tube in, and they are hooking him up tonight on a very slow dose ("that stinky baby formula sh-t", says Hon).  They are also making him wear a CPAP mask tonight ("like wearing a vacuum cleaner on your face!", says Hon).  I can tell he feels better; he's becoming more vocal!

He's now on the 5th floor (I told him that pretty soon he will have been on every floor in the joint!) which is the Cardiac unit.  Not because he has cardiac issues, but because that was the only available room when he was transferred from Phoenixville last night. His room is extremely small - Hon, me and 1 nurse, and there's no room for anyone else to join the party!
Didn't get to talk to anyone on the "Day Team" about the procedure - by the time Hon left recovery, everyone involved with the endoscopy had gone home.  I have my name on the list to get a call tomorrow where we hope to get answers to our questions...what procedures did they do?...why did bile duct stent stop working?...how many cysts did they drain?  will the cysts come back? ...when can the feeding tube come out?...when can he have regular food?... what's his discharge date?  Hey, we've got our 30th wedding anniversary on Tuesday, his birthday on Friday, and then Christmas on Sunday!   As much as we appreciate the excellent care he's receiving at Jefferson, we do NOT want to be spending these events in the hospital!  Click your heels, Hon, and repeat after me...there's no place like home....there's no place like home!

Day 46:  Sunday, Dec 18 - Saturday Night Fever - if there was a title for our night, that would be it.  Hon went to bed around 10 pm, and was complaining how cold he was.  He was visibly shaking and shivering, so I piled on the blankets.  After that he was very restless, getting up every 30 minutes, drinking a lot of water, and just not sleeping like he usually does.  And his forehead felt warm.  We don't own a medical thermometer, so the old hand-on-the-forehead is the best I could do.  We tried re-arranging his pillows, re-positioning the recline angle, walking up and down the hall - but he was acting out of sorts.  I got him to lay back down and laid my head on his shoulder.  As he relaxed his head on mine, I could feel the heat and all I could remember was the warning from Dr. Loren (performed the bile duct stent procedure on Day #37) that a fever was to be considered a very serious situation and to get Hon to medical help asap.   I texted niece/nurse Jess and ask her to stop by on Sunday to check things out.  Thankfully she would be off from work.
Hon gets up again and goes out to the sofa.  Then back to his bed - but now he's kicking off all the covers!  Then he decides he's sleeping in this recliner.  That means I have to sleep on the sofa so that I can be nearby for the bathroom calls  He finally falls asleep in his recliner around 3 am, and I sleep with one eye and one ear in alert!  Thankfully I don't have to get up early tomorrow.
It was a busy day of visitors.  Fire Company friends Jay and Deb stop by to check on Hon and to deliver a card signed by the firefighters.  Then fellow Pilot Carol stops by to pick up the Farm Show postcards that she graciously offered to address for me.   The plan for niece/nurse Jess to stop by is derailed when she discovers a flat tire.  So her dad - my brother - Rick comes to the rescue, taking her to get the tire fixed and bringing Hon his Sunday newspaper and a thermometer!  After taking Hon's temp, it registers 101.4 and I panic.  I take it again.  101.3.  I take my own temp - 96.8.  Now I'm questioning the accuracy of this meter.  So I call his Home Health Care On-Call Nurse and she is firm that he probably has an infection and to go to the ER now.  I request that Hon's sister Joanna come over and she brings 2 more thermometers for a 2nd and 3rd opinion.  99.5 and 101.5.  It's pretty official - we're going to the ER.
We have to wait over an hour to be called in Triage.  Then another hour for blood work.  Thankfully the same ER doctor that we had on Thanksgiving eve - Day #21 - is on duty tonight and he has signed on to handle Hon's case.  Everyone who comes in to see Hon is overwhelmed by his tubes and stomach drainage bag.  The nurses and doctors are asking me to explain the plumbing!  The blood work shows that Hon's bilirubin is very high - 9.7 (normal is 1.2), but his pancreatic enzymes are fine.  We now can see that the whites of his eyes are yellow and his skin is turning yellow - more jaundice. 

ER doctor guesses that Hon probably has a blockage in the bile duct - I wonder if that stent that Dr. Loren put in on Dec 9 comes with a warranty?!?  I quickly point out that most of the meds that I give Hon end up in his stomach drainage bag - they are not making it to the Small Intestine, so they are not getting absorbed!  The ER hooks him up on 2 antibiotics and we wait.  We get to listen to the toddler across the hall who is not enamored at all with the ER process.  It's so bad, I get up and close Hon's exam room door.  He lays on the bed shivering, I'm leaning my head against the injection needle disposal canister on the wall.  They take him out for xrays and for CT scan (well, now I don't have to wait for insurance to pre-authorize that!).  The ER doctor consults with Jefferson's GI on-call doctor and, while Phoenixville wishes they could admit him there, they admit that it would be difficult to find a physician who would take on Hon's "plumbing" with the G-J tube!  So they decide to send him back to Jefferson.
I leave the ER at 11 pm, tired, hungry and incredibly baffled that things got so bad so quickly.  Hon was still in a holding pattern in the ER waiting for Tranport to pick him up.  I kick myself for not being more aware that Hon had a fever.  This setback hurts.  We followed every rule handed to us by doctors, nurses, and home health care, despite the contradictions.  What are we doing wrong?

Day 45:  Saturday, Dec 17 - The Friday night sleep time isn't too terrible - at least we had the luxury of knowing we did not have to get up at 5:30 am, so the 3 diarrhea bathroom visits aren't quite as overwhelming.  And the diarrhea was actually at a minimum, so we did not load him up on anymore Creon (enzymes) or Imodium.   Hon actually gets himself up around 7:20 am and goes out to the family room to watch TV so that I can sleep.  Unfortunately Smokey didn't get the same memo, so he pesters me until I wave the white flag and get up, too.  

Our morning consisted of watching Action News and all the stories about the wintry weather that hit overnight.  An icy layer covers our deck, the trees and the driveway.  Everyone is warned to just stay home.  We don't need to be told twice and are very happy to comply with the weatherman's instructions.  We are just grateful for the weekend time that doesn't require the frantic morning race to get Hon up, dressed, and medicated by 7 am so I can leave for work.

Hon was actually quite alert and talkative this morning.  He even assisted with the changing of the deceased hallway light bulb.  I did the ladder and changing the bulb;  Hon held the flashlight and Smokey chased the dead light bulb around the hall.  We are a team.

Today Hon had a very special treat - a shave and a hair cut.  While I was at my own hair appointment this afternoon, I was telling Hair Stylist Sharon all about Hon; she was a month behind on the story and was shocked that he was actually worse than when I last saw her before Thanksgiving.

I showed her Hon's photo that I took this morning and asked for advise on how to deal with month-old facial hair.  She talked me through the best clipper to buy, etc.  But then she kindly offered to come out to the house on her way home and trim him up;  she was done for the day anyway.  She came with all her "gear" including cape, scissors and clipper.  Hon got the royal treatment without having to leave the comfort of his home.  He has now lost that "mountain man" look.

Unfortunately the shave now reveals a thinner face.  We weighed him today;  he's down to 174.  Considering he was 205 about a month ago, it is a grim realization that the pseudocyst is winning right now.  And we are counting the days until we can defeat it. 

Hon got 2 phone calls today from some of his forever buddies.  He enjoyed talking with them and telling them our story.  I also got an email blessing from our Fair friends in Oley with a plan for how they can help relieve some of the Farm Show Chocolate Baking contest stress that keeps me up at night.  We so appreciate the phone calls, emails, texts and cards.  They are a constant reminder of how many people love and are concerned for him, and how much they desperately want to help us through this journey.  Many people say "What can I/we do?" or "If you need anything, just ask."  And I am always at a loss as to how to respond because it all seems overwhelming and so daunting.  We are used to being the givers - not the receivers - and we feel awkward in this role.  Asking for help is hard because it is an admission that we aren't able to keep it all together on our own.  We need Hon to feel better, we need sleep, we need the darn cyst to be gone, we need our world to stop spinning out of control and go back to normal.  And no one can really "fix" that for us.  It feels like we've got this huge boulder in front of us and we're trying so hard to push it up the hill.  But then we receive these wonderful small acts of random kindnesses that are like extra hands helping us push - the homemade soup, the small Christmas tree decoration, the haircut, the blender, processing the Farm Show post card mailing, stuffing the Queen Contest mailing.  The boulder doesn't feel so heavy today.

I attended a surprise birthday party tonight for Fair friend Louise.  I didn't want to leave Hon, but he insisted that I go.  There were about 25 guests there at the restaurant.  Hon would have really liked the place and the food which was very good.  He would have gotten the chicken.  He would have had one beer.  He would have talked with Bob and Al and Diane and probably would have run into someone else at the restaurant that he knew.  As I sat there among a restaurant full of people laughing and chatting, I suddenly felt very alone, and even though I made a point to try and join in conversations, it wasn't as easy without Hon there to join in.   It is another grim realization that I am not the best at being "me" without Hon.  It feels uncomfortable.  And so I leave early to go back home to be in the comfort of our new routine of emptying the stomach drain bag, getting him his ginger ale, hooking up the tube feeding, administering the meds and putting him to bed.  He was feeling very cold tonight.  Shivering and shaking.  Extra blankets tonight, pop the enzyme pills and say a prayer that our overnight is uneventful .   

Day 44:  Friday, Dec 16 - Our new strategy of the nighttime routine hit a snag last night.  Hon was up 3 times with diarrhea which meant I have to also get up and do the unhooking of the pump and help him to get to the bathroom.  The pattern of light sleep, sudden wake up, and cautioned snoozing is a brutal cycle.  I almost called Jefferson and told them we weren't going to come for the vascular appointment.  But we ventured out . . . our "go bag" filled with every item I can think of to protect Hon and my car from any bodily function mishap.    It turned out to just be another day of frustrations.  1.5 hours to drive to Phila + Hon struggling to walk the long distance to the doctor's office (he says later, "If I had known it was going to be that far, I would have used a wheelchair!) + 1.5 hours to check in sit in waiting room, + 20 minutes waiting in the exam room = a 10 minute doctor visit with very little new info.  The doctor was very personable and answered my questions, but didn't even exam Hon.  He told us that the purpose of this doctor visit was a "safety check" to determine how to proceed with the blood thinner injections.  My take - the fact that he did the entire appointment using the computer (radiology images and test results), this is something he could have told us over the phone. 

The one thing we did find out was that Hon's gastric tube (the drain in his stomach) was blocked - the culprit?  The Creon (enzymes) that he takes before every feeding!  Between the 2 of us, we massage the tubing enough to force the blockage out.  Hon's face immediately shows the relief of discomfort he was experiencing in his stomach.  And we wonder why the enzymes that are supposed to be helping to break down the food in his small intestine are now coming out through his stomach drain!
Hon is now very quiet - his stomach doesn't feel good because it hadn't been draining;  he's pale;  he can hardly walk;  he's out of breath...basically, he's miserable.  It's a very silent ride home as I stew about the seemingly wasted time and Hon is counting the minutes until he can be back in his recliner.


We were very grateful to niece/nurse Jess who came over today and showed us the proper way to change Hon's incision dressings.  It was the voice of calmness that we needed to hear today - especially when Hon announces that he's not taking any of his meds today.  Nurse/Niece Jess tells it like it is.  He took all of his pills later tonight, without a fight.


Hon took a much-needed nap after the changing of the wound dressing - I could have just laid my head down and gone to sleep, too.  But there were many other items to be finalized.   More phone calls - the Home Health Care nurse, the GI nurse, our physcian consultant.  More theories, more strategies.  And so we keep going by trial and error to figure out the right plan.  As one doctor said, "We're just biding time until the cyst draining procedure can be done...so do whatever it takes to make him comfortable."  My Pilot service club members and Fair folks have come up along side me and offered to help on the huge projects that loom on the horizon - Farm Show and Fair Convention.



Day 43:  Thursday, Dec 15 - Our new strategy was pretty successful last night.  Only 1 time up around 3 am.  He took more enzyme supplements and finished out the night without incident.  He has decided that if he takes the yucky antibiotics with a bit of applesauce that this will solve the problem.  We're a little confused how to do that because if he eats applesauce, he has to take Creon enzyme supplements.  But if he takes the Creon, he can't take any other meds because the enzymes could break down the meds too quickly which will either make them too potent or too ineffective.  So what to do?  We roll the dice and do the applesauce/antibiotic cocktail without the enzymes.  When I got home he indicated he had no problem.
His physical therapist came today.  He was not able to complete the walking exercises because he got too dizzy.  He is down to 179 pounds.   On Day 15 of our journey, he was 205.   Before the weight loss was contributed to all the fluid retention.  Now the weight loss is really weight/muscle.  He even sounds weak.  His voice is changing - almost as if he has laryngitis.   He says he feels like he has no energy.  But he is intent on getting a grape popsicle tonight and eats it all.  We do the applesauce/antibiotic cocktail and send him off to bed.  Down the dark hall we go (oh yes, that was last night's dilemma - the hall light blew out and I haven't tackled how to fix that yet) ... Hon carrying his stomach drain bag in a bucket, me tottering behind with "Fred" (see Day 38 for explanation) and Smokey bringing up the caboose.  What a parade we make.
By the time he uses the bathroom, changes his clothes and get into bed, he's totally wiped out.
He gets out of breath very easily.
Talked at length tonight with his Home Health Care Nurse Victoria.  We are both concerned that Hon is not tolerating the liquid feed formula.   She feels that if the diarrhea doesn't subside in the next day or so, it may be time for the Jefferson GI team to change up the formula.   She is willing to call his Jefferson doctor tomorrow to try and get answers.
We head back to Jefferson for a 9:30 am mtg with this vascular doctor to see what we do about the blood clot in his splenic vein.


Day 42:  Wednesday, Dec 14 - I was so hopeful that I had come up with the magic formula that was going to keep Hon diarrhea-free all night.  But at 4:45 am, I abruptly found out I was wrong.  I spend the next hour and a half laundering the sheets, the mattress cover, the bed ruffle and the cleaning the carpeting between the bed and Hon's bathroom.   I put him back to bed and he sleeps soundly until I have to get him up so I can go to work.  He's actually in a pretty good mood and feels ok.  We breeze through our 2nd try at flushing his J tube and he takes his meds by mouth.  I make a cheat sheet of the meds and when they have to be administered and hang it on "Fred".
Hon had a pretty busy day - neighbor Gary stopped by.  His Home Health Care nurse made a visit.  She notices that his hands shake so bad that she decides it would be safer if she gives the Lovenox injection!  He gets a phone call from a friend from work.  He drank water, Gatorade and asked me for a popsicle - he ate 1/2.  Now that he has that anxiety lifted of "nothing by mouth", it's been very freeing.  He tells me that he tried to clip his fingernails and didn't have the strength to squeeze the clippers.  So I treat him to a manicure - complete with hand massage.

Our strategy tonight is to more pancreatic enzymes before the liquid feeding, and take more pills around 1 am in hopes that we can beat the diarrhea at its own game.   I'm encouraged how well he's doing, until I try to give him his evening pills, and he has some sort of reaction which results in him vomiting up most of what he's taken by mouth within the past 2 hours.  He won't take the pills now.  I really don't know what happens if we continue to be off-schedule with these meds.  He says the pills had a terrible taste.  2 of them were the same pills he took this morning, so not sure what happened..
Someone reminded me yesterday that when we pray we say, "Give us this day our daily bread..."   The prayer doesn't say, "Give us everything we want or everything we ask for".   It is a prayer to take 1 day at a time.  Not to look too far ahead.  I'd like to change that prayer to, "Give us this hour grace to withstand the bad and mercy to appreciate the good".  Here's to a quiet - and episode-free! -  night when we can both get some rest.

Day 41:  Tuesday, Dec 13 - It was a very short night.  After our first clean up when Hon went to bed Monday, he was up every 90 minutes with diarrhea.  This frantic pace has made us very adept at unhooking the Feeding bag from Hon's J tube.  I lay in the dark after each episode wondering how I'm ever going to get to work Tuesday morning.  

After he gets up, we take on our first challenge of flushing his J tube and injecting the dreaded enzymes - the one med that won't dissolve in water - the one med that has me very nervous because it could so easily clog the J tube.  It takes over 20 minutes, but I do manage to inject all the capsule contents.  Hon looks at me and says, "Well, we managed to get that done!"  Yes, we celebrate every small success these days.  I wait for his home health care nurse so that we can get more training on injecting the crushed meds.  But they are not able to come for several hours.  After many phone calls and emails to co-workers, I am able to circumvent having to go into work.  We are both exhausted from being up all night.  Hon takes a 4 hour nap;  I spend my afternoon calling his Jefferson nurse, his Primary Care doctor about his glucose monitor, the phone company about our home phone with no dial tone issue, the drug store about the protein powder supplement we're supposed to find.   The only one that provides me with any helpful information is the Jefferson RN - our dear Elizabeth who informs me that we should not be injecting meds into the tube, that yes he can take pills by mouth, and that she is very sorry that the floor nurses weren't given better information.  We suddenly feel so free knowing that all that stress of pill crushing, pill injecting has just been lifted.  I don't know why the floor nurses were doing it that way, but am very grateful that I don't have to. The Home Health Care nurse calls to say she won't be out until after 5 pm.  I tell her to just come Wednesday.  We have already adjusted our strategy and will be ok on our own tonight.

Blessings:  our second Christmas tree - a tabletop version sent to us by Fair friends Jim and Barbara.  It smells so good!...a visit from Hon's work friend Butchie.  

Day 40:  Monday, Dec 12 - A very overwhelming day full of contradictions and challenges.  Many phone calls this morning to try and determine if Hon was staying or coming home.  Rounds doctor = going home;  GI nurse = staying because they need to change his feeding formula;  Fellow = going home;  Home Health Care Liaison = not weighing on the question, just trying to schedule the home health care supplies.  Finally I find out from the Home Health Care Liaison at 1:45 pm that I should already be picking him up and, oh!, by the way, I need to have him home by 3:15 because the nurse is coming to train me on the feeding pump.  Well, that wasn't going to happen when it takes 1.5 hours to get there/parked/checked in through security and 1.5 hours to get home!  I arrive to find out that his nurse has gone over all the instructions with Hon, so I'm left in the dark.   Question I will have for God when I see him face to face;  why does it take 7 hours to go from ER to being admitted or 7 hours to go from Recovery to a hospital bed, but they rush you out of the hospital at record speed?
We leave with little training and more questions than answers.  We make it home, but miss the Medical Supplies delivery.  The Home Health Care nurse shows up but can't do much without the supplies.  The Supplies arrive at 8:45.  Another Home Health Care nurse comes at 10 pm.  By this point we're all so tired, we only learn how to do the feeding and we'll figure out the meds tomorrow.   Put Hon to bed at 11 pm.  I tell him to call me if he needs to use bathroom.  I come back out to finish my chores and shut the bedroom door so Smokey doesn't bother Hon and our new "Fred".   Note to self:  closing the bedroom door prevents one from hearing the patient calling that he needs to get up.  He called me 12 times.  And so now I have a clean up in aisle #3.  Thank goodness for the aloe cleansing cloths that Nurse Danielle sent us from Texas.  We already put them to use.  I go to bed worn out and feeling like I just lost my nomination for Wife of the Year.

Day 39:  Sunday, Dec 11 - Today was a day off from driving to Philadelphia.   Just me and Smokey getting stuff down at home . . . oh, and some retail therapy for me in afternoon!  Called Nurses' Station in early afternoon to get the status:

• All vitals stable.
• Has met his goal of 50 cc of liquid feed
• Was up 4-5 times during night with diarrhea, and 2 times today.  They are testing him for C-Diff (this makes the 4th time in 1 month).  They can't give him any anti-diarrhea meds because it he does have C-Diff, they don't want the infection to stay inside his colon.   The other possibility is that his body is just slow in tolerating the liquid feed.
• Declined to walk halls or sit out in the chair because he's anxious about not being near a bathroom - he doesn't get a whole lot of advanced warning!
• Was watching the Eagles game on his room TV - first time he's turned TV on since he was admitted on Thurs

If he does NOT have C-Diff, there's a chance he'll come home tomorrow. 
If he HAS C-Diff, he'll probably have to stay another day for treatment.  Hospital doesn't like to send patients home with diarrhea because of the susceptibility to dehydration.  We're not too keen on it here in our home either.

Blessings today:

A secret Santa left an adorable miniature live tree right outside our garage- all decorated and with a pair of socks for me and Hon.  I was on the edge about putting up a tree for Hon (we typically don't put up a tree because of time restrictions with Farm Show and Fair Convention right after Christmas), but thought this year I would.  Then as the days went by, that inclination got weaker and weaker.  Then our secret Santa showed up.  I love our little tree!!  Who needs a big tree?  This one is just perfect.  Thank you secret Santa!  Oh, can you bring a cage for it?  This is Smokey's first experience with a Christmas tree.  I've already put decorations back on 4 times.  I think keeping the tree upright will be a challenge.

Boscov's - I love that store.  Went around 3 pm and got everything on my list including larger shirts for Hon so he will be more comfortable with the G-J tubes. 

Friends - right after I got home I heard a loud "whoosh" sound and then this constant noise of water running.  I'm running around the house checking every sink, toilet, the water heater, the water pump...nothing.  After a half-hour, I called neighbor Gary to come investigate.  Turns out the water line under our deck must have not have been completely drained, and with the cold weather, it froze and burst.  The valve downstairs wasn't completely turned off, so water was pouring out into the backyard.  Now I know how to turn that off, and we decided that the repair was a project for Hon to do...in the spring!

Family - they constantly check on us, send encouraging messages, and give cards.

Back to work tomorrow, and wait for a call from Jefferson and the medical supplies company, try and convince the Vascular Dr. to just go see Hon while he's in the hospital rather than making us run back down on Tuesday, and try to figure out why our house phone isn't working.

As much as I want Hon home, I pray that the hospital doesn't discharge him too early.  Getting the diarrhea under control first would take a lot of anxiety off of us both.  We've got enough to learn with all the liquid feedings. 

I cleaned out the car tonight....just in case "Fred" decides he's coming home with us!



Day 38:  Saturday, Dec 10 - I went back to Jefferson in the afternoon - traffic was a pain in the butt.  Hard to tell why - Flyers game and Army-Navy Game were already underway.  Where are all these people going at 2:30 on Saturday?  So it's at least an hour, but I get a great spot in the parking garage.
When I get to his room, the smiling Technician tells me that Hon's in the bathroom with "Fred".  I assume "Fred" is a male nurse or technician.  But no, apparently "Fred" is what Hon has nicknamed his IV pole.  The RNs and Technicians are also calling it "Fred" and all seem quite amused with the whole thing.  They make comments like, "Fred is always by your SIDE!"  "That's Fred - you can really LEAN on him!"   "That Fred is a real STAND UP kind of guy!"  Oh well, whatever it takes to keep him motivated!
Hon is more chatty today.  Says he only gets pain in his belly when he has to burp.  And as soon as he burps, you see the gunk coming through his "G" tube into the collection bag.  Today it's a lovely shade of emerald whereas the past 2 days it was blackish-brown.  I assume this is a good sign.
Of course all the experts came to see Hon before I got there.  So the information you read next is what I got from Hon...just a disclaimer on its accuracy.
Dr. Godfrey Uno from Vascular came and checked him out.  I think he was a Resident - that seems to be the pattern of who you get on a weekend.   Hon said he had a really thick accent and was hard to understand.  But Hon did understand that he has a small blood clot in his stomach vein, but it's small.  It may just mean going back on the Lovenox blood thinner for a while.  Hon campaigns - again - to Dr. Uno about the ridiculousness of being discharged on Monday and having to come back down on Tues for his vascular doctor appointment.  Why can't they just do the appointment while he's in-patient?  The Dr. Uno agrees and says he'll look into it.  That's the second time we've heard that in 2 days.  They'll look into it.  If we don't hear anything today, I'm calling Vascular again on Monday.
Then two Residents come in from Gastrointestinal.  They do the same exam as Dr. Uno.  They tell Hon that he may not go home until Tuesday.  Hon has to be able to take in 50 cc of the feeding liquid diet in 8 hours.  But they've been slowly ramping him up to make sure he can tolerate, and he was only at 40 cc after 24 hours.  I'm not a great mathematician, but I know enough to realize we are way behind the goal.
Now the diarrhea is back which is upsetting because - well, it just is.   The RN says it's most likely a reaction to the liquid feeding diet.  Hon mentioned it to both doctors but no one seemed surprised or mentioned any plan.
Hon is still "Nothing By Mouth".  He gets his meds through the "G" tube.  Last night's RN gave him his Niacin through the tube.  Hon said he instantly felt like he was burning inside.  They had to quickly call Pharmacy to find out what happened.  Apparently the Niacin is an "ER" (extended release) med - it has a coating on it to protect your esophagus and lining of stomach when you take it by mouth.  But because they crushed it, the protecting coating was eliminated and it was irritating his small intestines.  So they now have him on a substitute med - no more Niacin.  They tell me that I have to be very careful about any meds that are extended release and to check the bottles.  Hmmm...they missed it on the Niacin.  But they expect me to figure this out?
Today's nurse does another demonstration with me on pill crushing, using the syringe, flushing and drawing the line, and injecting the meds.  The stinker med is the Creon - pancreas enzymes.  They don't crush well and they act like wet sand when they try and inject the pill-water solution into the line.   So they clog the tube.  Even the RNs have trouble, so that is not giving me confidence.  You can work with it when it's in the part of the tube that's outside Hon's body, but what do you do if it gets clogged inside?  He needs a port hole!!  So the RN made a motion that they instruct Hon to take the creon by mouth.  I second the motion and Hon says "yay".  Now we just need the GI doctor to enact.
We spend most of our time talking about the day of doctor visits, the Army-Navy game score, the nurses who have been excellent with him, and the annoying patients who keep him up with their complaining and moaning.   We talk about how we're going to manage "Fred", the G-J tube supplies, and the whole process with a very curious and active Smokey the cat at home (I can just see him swinging with "Fred!")  We talk about how I will I get through Farm Show on Jan 6-7 without Hon's ever-present help.  We talk about whether or not he'll even make Fair Convention in January.  And Daytona looms on the horizon for February, but we can't bear to talk about that yet.  It's already depressing enough that he'll miss the other two events to take that one away from him, too.  But in our hearts, we know that he probably won't be able to withstand the long days and all the walking.  We put that one on the back burner and check the Army-Navy game score again.   Then Hon needs to go to the bathroom again - diarrhea is coming.  Hon, the Tech and "Fred" head back in.  I have to laugh when I hear Hon say, "Fred is watching".  And the Tech replies, "It's ok.  Fred has seen it all...he doesn't mind!"

Day 37:  Friday, Dec 9 - When I called the Nurses' Station this morning, the report is that Hon had his labwork (another 7 vials of blood) and another CT Scan (at 11:40 pm).  His liver enzymes, especially the albumin, are elevated which is causing the jaundice.  They schedule an ERCP (ready?...Endoscopic Retrograde Cholangio-Pancreatography) procedure to go in and see what's going on.  He goes down around 10 am, but ends up waiting until 11:40 am in a hallway he terms "the wind tunnel".  I set up my temporary "office" again in his hospital room.   We finally get word at 3 pm that he's done and they did put the duct stent in.  I am relieved that we don't have to come back for another procedure.

When he returns to the room, he looks really whipped.  He's so out of it that he cannot walk back to his hospital bed; he had been able to walk to bathroom and then the hall when they took him down. They have to lift/pull him over which is extremely painful for him.  He can hardly keep his eyes open, has belly pain, and feels nauseous.  My heart sinks remembering how chipper he was yesterday.  I feel like we just took 10 steps backwards.

The Resident Doctor stops in and prescribes pain killers and anti-nausea meds.  She tells me that one of the side effects of an ERCP procedure is pancreatitis...wait a minute - HE ALREADY HAS THAT!  Hello???  Why would they schedule a procedure that would start that up again??  He has to stay overnight so they can monitor his pain and make sure it does not get worse.

Hon sleeps; I go back to my recliner by the window and watch all the people walking around Chestnut and 10th Street.  Young couples pushing their kids in cute strollers that look like little cars;  People going in and out of the Starbucks on the corner;  Students going into the Jefferson Medical Bookstore;  Colleagues walking on their way home from work or on their way to a night out.  Life goes on for so many, but here, in Room 3238, it feels like we've lost the life we know.

Hon's nurses Alyssa and Kelley are very personable and helpful.  I can tell they feel sorry for Hon;  I overhead one saying to the other, "This poor guy has been through the ringer!"  They are very attentive to checking on him every 1/2 hour, and even take time to do some educating about the 2 tubes.  They can now take his meds, crush them, add water, put the concoction into a syringe, and shoot it into his "J" tube - this eliminates him having to swallow the meds.  They show me how to drain his "G" tube (drain from the stomach) and how to flush the tubes.
The Home Health Care Liaison comes in and explains that all of Hon's medical supplies will be delivered to the house on Monday.  Then Hon will be discharged and then the Home Health Care Nurse will come that same day to get everything set up.  


Hon's surgeon Dr. Loren comes in with another Resident.  He's very jolly - I instantly like him.  He explains how the procedure was done, the stent and the status of the pancreas and annoying cyst.  The pancreas is still leaking fluid which is collecting in these cysts.  Yes, you read correctly ... cystS ... plural ... he now has more than 1.  The "fluid collections" as they call them, closed off the bile duct.  Now the stent is in and the fluids from the pancreas and the liver are able to drain properly.  I can notice already that he's not as "yellow" as yesterday.  He says Hon's was a very a complicated procedure, and this doctor does hundreds of these a month!  A couple of times he was practically standing on his head in order to see everything because all the fluid, inflammation and cysts are just reeking havoc inside Hon.  He almost drained the cysts, but is worried that it's too early.  He wants to wait 2 more weeks and then schedule another CT Scan.  Be thankful we are at Jefferson;  Phoenixville Hospital would not have been able to handle all this.  He tells Hon he can go home on Saturday - but no, wait, the Resident reminds him that the medical supplies won't be there - so Hon has to stay, not because he needs to medically, but because we're caught in a weekend timing dilemma.  It is not a joyous moment when I tell Hon he will be here through the weekend.
We really have to really be aware of any fever...it's not something to mess with and can lead to fatal outcomes if left untreated.  Because he had 2 procedures in 2 days, he's got a higher risk for infection, not to mention all that leaky fluid in his body.

I know many of you have asked questions, so here are some answers:
1.  Is the cyst growing?  Yes, it's getting larger but shouldn't grow too much more
2.  Is the cyst getting a hard surface?  Yes, it's so close, but not quite ready yet!
3.  Will the cysts come back after we drain them?  90% of patients - no;  the other 10% - yes.  But it could be in 6 months, 1 year or longer.  No guarantees.  Doctor says we will develop a very close relationship with our GI physician, and he hopes it'll be the Jefferson GI team.  No offense buddy, we like you, but we long for the day when we don't see this place again!!
4.  When do we feed?  12 hours starting about 7 pm.  Only feed 1x a day
5.  What does "not tolerating the feeding tube look like?   If he has nausea or pain
6.  When will he feel better?   It usually takes 6 months - 1 year until Ken will actually be able to say "I feel great!"  If the cysts come back, we will be back for more draining procedures.  What I hear is that we are in this for the long haul.  Hon's digestive system is never going to be the same.

As time goes on Hon starts to engage in more conversation and starts asking questions about me, Smokey, my mom, etc.  The nurse determines he's well enough to start feeding.  She walks me through the steps but assures me that the Home Health Care nurse will train me.  She holds up a Gatorade-looking bottle and says, "Want to try dinner?" to which Hon replies, "What are we having?  Pork chops?  Garlic Mashed Potatoes?"   Now that sounds like my Hon!  The goal is to take in 50 ml a day.  They are starting with only 10 ml for tonight and will increase by 5 ml every 4 hours, making sure he can tolerate the feeding.

I feel better that he's bouncing back, so I pack up all my bags to start the trek back home.    Not sure what the plan is for tomorrow, or if I'll get trained, or if I see the doctor, dietician and/or nurse.  To quote Scarlett O'Hara, "I'll think about that tomorrow!"  Too tired now to think at all.




Day 36:  Thursday, Dec 8 - PART II - What a long day.  Got down to Jefferson by 6:30 am - way too early for the 7:30 check-in, but who knew what traffic would be like.   Unbelievable how many people are up and driving around at 5:30 am.  Funniest part was seeing all the traffic leaving the City, headed to the suburbs.  And almost as much traffic heading from the suburbs to the City.  Wouldn't it save a lot of time and gas if everyone just stayed in their own towns to work rather than making that big switch every day?

Anyway, we make it to Valet Parking and get Hon inside.  He surprises me by walking to the 4th Floor registration instead of using the wheelchair.  We are the only ones in Registration at that hour of the morning.  We meet a nice lady named "Donna" who is our escort from Registration to the 5th floor Gastrointestinal Dept.  Turns out she's a volunteer who helps in the mornings BEFORE she goes to her regular job!  She has 5 more years until she retires and she then hopes to volunteer even more hours.  What a saint!

We nap in the GI Department waiting room because we now have an hour wait until they come to fetch Hon and take him down to the Endoscopy Procedure Unit. 

I'm not allowed to go along, so I set up my temporary "office" space and do work/work in the waiting room.  Finally around 11:30 the dr comes out to report that all went well and Hon is resting comfortably.  However, they noticed that Hon is clearly jaundiced...I knew it!! (See Day #33).  Now they are worried the darn cyst is pressing on his bile duct and giving the liver a hard time.  They want to keep Hon overnight and order more tests, more blood work and probably another CT scan to try and figure this all out.  If this is the case, they want to insert a stent to correct the problem.  "What's a few more holes in me??" says Hon.

Everything seems to be rolling along until the wheels come to a screeching halt.   I watch people come and go, come and go, come and go, and finally I'm the lone survivor in the waiting room.  I point out to the nice girl at the Check-In desk that I was the first to arrive and now I'm the last one waiting.   They don't come to get me until 1 pm, only to put me in another waiting room until 4 pm.  All the people who came after we arrived are finished with their procedures and going home or back to their hospital rooms.   When an RN makes a wise crack about the fact that I'm still sitting there, I ask her why I haven't been called back yet.  She informs me that there is no bed available (what a minute...we're Ken and Karen...not Joseph and Mary!) and so Hon has to stay in Recovery until a bed opens up.   Finally another RN named "Joe" (not "Joseph!) takes pity on me.  He brings me a cup of cranberry juice, a pack of Ritz peanut butter crackers and a package of graham crackers. 

It's the first meal I've had all day and so that makes it the BEST meal.  "Joe" is now my new best friend.  Hon's been asking for me (I guess so, he probably wonders what I've been doing for the last 5 hours!) so "Joe" lets me come hang out in Recovery.  The place is very lively with patient beds moving about, nurses rotating between all the recovery patients or just hanging out and chatting at the Nurses' Station which is right across from Hon's bed.  We are amused listening to their chatter - we learn all about Yeti coolers, the best way to avoid a hangover, and how to alter your Spanx so that it's easier to pee.   All things that everyone needs to know.  About 5:20 most of the RNs go home, and  most of the Recovery patients have left or returned to their hospital rooms.  So we're down to me and Hon, and another man who has the unfortunate fate of having to be scheduled for colon surgery tomorrow. 

RNs "Joe" and "Pam" now spend more time chatting with us in between calling upstairs to find him a bed. 

They show me Hon's new exterior plumbing - the G tube and the J tube - and I get a quick lesson on how it all works.  The G tube allows them to drain his stomach if he feels nauseous or bloated.  They've already collected quite a bit of gunk already and Hon feels better and his stomach is not as distended.  I know he's feeling better because he's teasing "Joe" and "Pam" and even telling Joe all about driving his triaxle dump truck.   

I say a little prayer that since we've been very good sports about waiting all this time, could we please get Hon a really nice room...one up in the Penthouse, with just a single bed.. and a fantastic view - of the ocean.  Next thing I know here comes "Joe" waving a yellow sticky with room 3238 written on it.  "This is an awesome room," declare my new best friend.  I point out that it's not on the GI floor (10th floor), but "Joe" says this is better than the 10th floor.  So I don't complain.  I'll just have to get my fill of ocean breezes another time.

Our friendly Transport guy takes us on a long journey through a maze of hallways and elevators to get to Room 3238.  I have now resigned myself to the fact that I will never find Hon again...not without a bright star to guide me.  And I'm not sure I'll be able to get myself back to Valet Parking either.  But his room is nice - single occupancy, a great view of the dorm/apt building where many of the Jefferson residents live, and more friendly RNs with whom he quickly strikes up a conversation about bison burgers.  Ok, now I know he's feeling better. 

His new nurse "Sarah" and tech "Melissa" are just smitten with how funny he is and I can see he's going to get a lot of attention tonight.   So I head back out into the unknown to find my car.  Next stop for me was to Texas Roadhouse in Royersford where I treated myself to a grilled salmon dinner and cheesecake.  I rationalize that I earned this today.

Will call the nurses station in the morning and find out the game plan.   Who knows...I may meet 3 wise men!  

Day 36:  Thursday, Dec 8 - PART 1 - Not much happened yesterday other than another bout of diarrhea around 5 pm.  Hon looks exhausted and fed up.  He says he's sick of taking pills.  I do manage to get him to drink about 1/2 cup of chicken broth.

Today is Feeding Tube Day.  It is currently 5:07 am and we are up, showered and dressed.  Hoping to be in the car and on the road by 5:30 am.  I'm packed with extra clothes, bucket, bed pads, blankets - we look like we're going camping!  We need to be in the City by 7:30 am to check-in and procedure is supposed to start at 8:30 am.   We are heading out into the dark and into new territory, but know that God is with us. 

Day 34:  Dec 6 - I know as soon as I walk in the door tonight and see his facial expression that he's not good.  He looks drawn and tired.  And when I ask, "How're you doing, Hon?" he just shakes his head no.  What started out as a good day quickly deteriorated when his diarrhea returned with a vengeance and with no warning.  We are both so frustrated because we have done nothing differently in the past 5 days.  We try to pinpoint something different with food or drink - maybe because he had milk with his cereal the past 4 days?  Or maybe because he went back on the Metformin?  Is it a result of taking the new anti-nausea medicine?  He eats so little, it doesn't make sense.  I text his Home Health Care nurse, but get no response.  He looks completely dejected and won't eat any dinner or finish his water.  So total food intake:  3/4 c of Cheerios with milk and 12 oz of water.
His Home Health Care nurse was there in the morning and all his vitals were good.  PT was here and really worked him through the paces with walking and arm exercises.  But the 12:30 diarrhea attack has shaken him.   He looks completely dejected and wants to go to bed at 8:30 pm.  As he's preparing for bed, I notice how his arms and legs have lost muscle tone and his skin just hangs.  But his belly is still overly distended.  I say a silent prayer that the diarrhea doesn't return and that we're able to make it down to Phila on Thurs morning for the procedure. 
The Insurance statements have started to arrive.  The provider's charges for just his visit to the ER/ICU at Phx Hospital back when this all began - 11/3 and 11/4 - was over $57,000.  We will be billed about $960 for those 2 days.  Did you know an MRI costs of $9,000?  I have not yet received the statement from Jefferson's ICU (7 days), Jefferson regular hospital, the 2nd Phx Hospital ER trip or the 2nd admission to ICU. 

Because he had been doing fairly well these past few days, I was planning on doing an activity where we look through old family photos tonight in memory of Hon's mom whose birthday would have been today.  From the many family stories I've heard over the past 30 years, Hon was definitely her challenging "middle child" - always ornery, always teasing, and always a handful.  But she loved when he would stop by her house and bring pizza when he was on police duty.  He loved everything she cooked, except for rice pudding.  No meal I cook will ever match up to "the way mom made it."   As I sit alone looking through photos, I say another silent prayer that she watches over him from heaven as we continue to face these trials. 






Day 33:  Dec 5 -  Hon had a good night.  I think sister Joanna's homemade chicken broth did away with his indigestion.   He already had breakfast figured out...Cheerios with milk.  And he ate again this evening - more of that good chicken broth.  Water intake only 16 oz.
We're slowly getting into a routine with this new anti-nausea medicine that seems to be working.  It makes Hon a lot more drowsy than the Zofran, but it seems to be keeping the nausea at a minimum.
I notice that he gets shaky when he tries to hold things like a cup.  He tried to do his own dosage of the anti-nausea medicine today and said he had a heck of a time because he couldn't hold his hand still to pour from the bottle and then put the spoon to his mouth.  I also think he's starting to look jaundiced.  Hmmm.
His home health care physical therapist had to cancel today because they had snow up where she lives.  She and the home health care nurse are coming on Tuesday.
Round #2 for me today to get Hon's GJ Tube procedure scheduled.  After Friday's frustration with the phone communication breakdown,  I was determined that I was not letting today go by without an appointment date/time.  I'm sure they thought I was a PITA, but persistence paid off - 4 calls until finally on the last call, around 4:30 pm, I got an answer.  Jefferson's scheduler had to rearrange a lot of other things, but she was able to schedule his procedure for this Thurs, Dec 8.   After kicking myself all weekend that I missed out on today's opening for the procedure, I now see that God had a better plan (doesn't He always?)  Miraculously THURSDAY is the ONLY day that Hon's GI doctor will be at Jefferson this week.  Everything happens for a reason.
We have to be there by 7:30 am, and the procedure will begin at 8:30 am.  Sounds like it's going to be a very early ride down to Philadelphia, in the dark.   Maybe we should just sleep in the car in the garage to save time that morning.  Well, at least we won't have much traffic driving at 5:30 am!!   Most likely Hon will have to be admitted overnight.  We have to meet with a dietician, a nurse, be trained on the feeding and the stomach drain tubes and get all his home supplies ordered to be shipped to our home.  While it seems like we should do all that on Thurs afternoon since his procedure is so early, I'm told it's a problem trying to coordinate all those people on short notice.  So that means I have to drive back down to Phila on Friday.  But as the RN explained, better to get all the education and training at Jefferson; otherwise we would be on our own over the weekend and wouldn't get any home visiting nurse until Monday.
I ordered a glucose meter today.  Next step is to call back to the Primary Care dr for a prescription for the test strips.  He will need this once he goes on the feeding tube.    


Day 32:  Dec 4 - Hon wakes up this morning and says, "You know what yesterday was?"  No, what?  "Merry Pancreas!"  Merry Pancreas??  "Yeah, it was a month ago that I got pancreatitis!  Maybe we can get copies of the CT scan and use it for Christmas cards!"  Ok...maybe the drugs are getting to him, but at least he's trying to have a sense of humor!

He's already got his morning all planned out and tells me in great detail:  1)  start his new anti-nausea medicine;  2) wait an hour;  3)  take his enzyme supplement;  4) eat cereal - a little more than yesterday, please (that's encouraging!);  5)  do his Lovenox injection; and 6) take the rest of his morning meds.   It feels good to see him taking charge!  We follow his plan to a tee; well, almost.  The new anti-nausea medicine knocks him out.  The "may cause drowsiness" side effect is real.  We get stuck at Step #5.  When he finally wakes up an hour later, he's definitely spaced out.  His eyes are open, but he's in slow motion, and I cannot get him to focus on finishing the plan.  I'm concerned because they told us he has to take those Lovenox (blood thinner) injections the same time every day.  And now we are 2 hours behind schedule.  Luckily he gets a phone call from fair friend Kevin and that does wonders in reviving him.  Sometimes in the dark, but never at a distance.  God can even send help through a phone.

I have a long list of to do's and am now behind schedule because of the setback with the new medication.  But I make sure I pick up the homemade chicken broth from his sister Joanna because I'm determined that he's going to eat twice today.   I get home and Hon needs more anti-nausea medicine.  But we proceed with caution this time and only do 1/2 a dose.  He's also having a bout with indigestion.  But he wants the chicken broth and is able to drink about 3/4 cup .  We hit our goal.  But I see him fading fast, so we quick do the evening meds before he slips off into lah-lah land again.  He's in bed by 9 pm.  Hopefully we have no problems with the indigestion during the night.

Day 31:  Dec 3 - Hon had an early morning since I had to be up by 5:15 am to be at work by 7 am to prepare for our Santa Photo Day event.  So Smokey kitty cat was in charge!

Hon spent his day watching TV, visiting with brother Gerrit, and reading the cards he got from fair friends in Huntingdon County, Oley Valley and Pike County.  He also was pleased to hear that cousin Bob in Tennessee and sister Connie in Australia are sending good thoughts his way, sister Joanna made him homemade chicken broth, and brother Richard in Kentucky checked in by text message to be sure Hon knew the Penn State Big Ten championship game was actually on a cable channel that we can get.  So blessed to have so many people rallying for his healing.

We determine he has a "Pretty Good" day when we have no diarrhea and nausea is minimal.  He took the last of the preferred anti-nausea medicine tonight;  now we have to use a different prescription tomorrow because insurance says we can't have anymore Zofran until 12/27.  We are finding that taking the Zofran every 6 hours does help to manage the nausea attacks.  Hope this new prescription doesn't give us any problems.  I read the side effects to Hon....drowsiness, blurred vision and dizziness.  Hon says, "So I'll be a sleepy, dizzy guy who can't see straight!"  At least his humor is being restored.
 
Total food intake was 3 oz of cereal with milk and 16 oz of water.  He increased his walking to 4 laps up and down the house. We both took a 2-hr nap this afternoon...normal for him;  Santa Photo Day just wears me out!

Watched the first half of Penn State game and back to bed - Penn State was losing - badly!   He and Smokey couldn't take anymore.  Sorry he wasn't a better fan, Rich!

The children today left letters for Santa in a special mailbox.  One of them was very well written, with illustrations.  The faith of a child that a simple letter will make all their Christmas wishes come true is precious.  So here's my letter to Santa...
"Dear Santa,
Can you please make Hon feel good again?  He's been a very good boy this year and we could really use a break from all his pain and suffering.  He really hates being sick.  We miss seeing him go to work to drive his tri-axle dump truck, doing his normal daily routine, and enjoying food.  Thanks, Santa.  If you can help us with our Christmas wish, there will definitely be a lot of cookies in the deal for you.  Love, Karen and Smokey"





Day 30:  Dec 2 - It's been a month.  In some ways very fast paced; in other ways agonizingly slow.
Today was a fairly good day for Hon.  He had back to back visits from Home Health Care Nurse Victoria and Physical Therapist Lorraine.  He ate 1 scrambled egg, 1/2 cup of applesauce, 2 bottles of water and 1 glass of ginger ale.  Nausea was kept at bay with the medication and no diarrhea.  He did not, however, complete the 6 minute walk test.  He ran out of steam at 3 minutes.  Not enough calories is taking a toll on his energy level.

I had a fairly frustrating day trying to be his medical advocate.  My main goal was to schedule his GJ tube insertion procedure date.  But the Jefferson Hospital Scheduler returns the call on our home phone, and our home phone is out of service today.   Since they couldn't reach me, we lose out on a time slot for Monday.   Now the Dr has no openings and we must schedule with one of his partners.  But it's too late in the day now to make any arrangements and we won't find out available times until Monday.   The insurance company turns down our appeal to get more Zofran for the anti-nausea treatments.  We are given the second-best medication.  One of its side-effects is fatigue.  He's already got enough of that - we don't a pill to give us more. 

The web of medical personnel continues.  Coordinate with his ophthalmologist since his pre-existing eye pressure diagnosis could affect the anesthesia used.  Coordinate with his primary care doctor to re-adjust his pre-diabetic medication to just Metformin before he goes on the feeding tube.  Obtain a finger-stick machine with test strips to monitor sugar levels.  Consult with the Vascular doctor on when to stop the Lovenox blood thinner injections.  It's like a carefully choreographed dance.  Everyone needs to know the steps and when to make their entrance and exit.

The best part of Hon's day...Smokey finally took up his normal napping spot - laying in the crook of Hon's arm with his face tucked under Hon's chin.  And so for tonight, all is well.  All the worries, unknowns and frustrations are put on the shelf until the morning.

Day 29:  Dec 1 - Another disappointing night on Wednesday.  I got home and Hon was eager to tell me that he had a pretty good day - did his walking and his exercises, heated up his own chicken broth and even drank 3 bottles of water plus some Gatorade.  So we decided to try the new "Robin & Helen" Ninja Blender and make him a Banana/Strawberry smoothie.  He even asked if I would put in some ice cream (had to admit to Hon that the ice cream doesn't live in our freezer anymore - see Day 26 for explanation!).
I was encouraged.  However in the short time it took me to read the blender instructions, put the blender together and  make the smoothie, he got a sudden nausea attack and was only able to take 2 swallows of the treat.  I sat and watched him struggle to overcome the nausea.  After about 45 minutes, he looked at me and said, "I just want to go to bed."   I gave him one of his anti-nausea pills and put him to bed.  As I covered him up with his layers of blankets and kissed him on the forehead, he said, "I'm sorry I'm such a pain in the butt."  I had to fight back the tears.

I knew today was going to be a workout as we ventured down to Hon's GI Doctor appointment at Jefferson.  But I kept remembering the verse..."The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." (Deut 31:8).  And today was an awesome example of those promises.  First we had no trouble with our 1.5 hr commute eastbound on the expressway.  Traffic was backed up for miles...going WESTbound!   Also we got valet parking and the security desk let us borrow a wheelchair to make the journey to the 4th floor for registration and 5th floor for doctor's office.  Also Dr. Larry - a internal medicine consultant who is helping us with our difficult case -  miraculously happened to text me just as we were waiting in registration and was able to come over and sit in on the appointment.  Our Certified Registered Nurse Practitioner today was Elizabeth - the same one who has been fielding all my phone calls over the past 2 weeks.  Again - a multitude of angels guiding us.

So here's the latest update as a result of the doctor's visit:
Because Hon is malnourished (He can't eat because he's nauseous.  He's nauseous because the pseudocyst and fluid collection from the damaged pancreas is pushing on his stomach.) and 

Because it's too early to drain the pseudocyst (We have to wait 4 weeks for the wall to get tougher so that they can insert the stent and let the cyst drain into his digestive system.), THEREFORE...

Dr decided that Hon needs to have a temporary feeding tube. All the medical people in the room were nodding "yes"...I was the one shaking my head "NO!"  But after they explained it to me, it was less scary.  The Gastrostomy-Jejunostomy (G-J ) feeding tube will have 2 ports:  1)  into his small intestine to allow nourishment to bypass his stomach and go directly into his intestines and be absorbed by the body and 2) a vent for releasing air or draining fluid from the stomach if Hon gets bloated or uncomfortable.   He will still be allowed to take food and drink by mouth, but if he can't tolerate, then he should stop and let the feeding tube be his back-up plan.  The G-J tube will be inserted and I will be trained on how to hook him up and disconnect him, as well as how to work the release valve.  Mind you, my talents are more on the creative side.  Hon always handles the mechanical stuff.  So out of my comfort zone!  He gets hooked up around 8 pm and then the tube feeds him overnight.  The next morning he just disconnects and away he goes with the rest of his day!  Simple...right??   We'll see how well I do with G-J Tube 101.  Thank goodness we have a nurse in the family!!

His pancreas is severely damaged.  It will take Hon at least 6 months to get back to his baseline.  The pancreas may repair itself, but people can live without 90% of their pancreas...Hon's isn't that damaged, so doctor says he will be get better.  So for those of you who are keeping track, it is possible to live without your gallbladder and most of your pancreas.  Makes you wonder why God gave us extra parts!

They are going to try and find another anti-nausea medicine to take the place of the Zofran until they are able to plead our case with the insurance company that we need more than 9 pills every 30 days. 

They are going to increase his dosage of the Creon (enzyme supplements) which is to take with every meal.  This should reduce the diarrhe.

Some ideas for meals now include REAL chicken broth, REAL beef broth (this requires that I cook;   no more stock-in-the-box stuff), sorbet and popsicles.  He can have up to 40 grams of fat a day, so yes, he should be able to have ice cream...if I don't have another meltdown night and eat it all.

He is to get in the habit of laying on his right side to allow his stomach to flop away from the pancreas and give him temporary relief.

After we get him through the next 4 weeks, and he can have the cyst drained, doctor says he will feel trillions better.  We long for that day.

Upcoming Events:
G-J Tube insertion - TBD, but will be sooner than later.  Will have to stop the Lovenox blood thinner which CRNP Elizabeth is going to coordinate with Vascular Team
Vascular Doctor appointment - Tues 12/13, 2:45 pm
CT Scan - 4 weeks from today - we can have this done through Phx Hospital - yeah!
Cyst Draining - TBD once CT scan proves the cyst is tough enough to withstand the procedure 


  
Day 28:  Nov 30
Last night not so good.  Hon's total intake yesterday consisted of 1 cup of chicken broth, 3 teaspoons of pureed baby food (apples/peaches), and 3 tablespoons for water ice.  He did drink (3) 8-oz bottles of water.  Says he's tired and cold all the time.  I say "that's because you're not eating enough calories and your body's got nothing to create energy!".  He falls asleep at 10 PM and I lay on the sofa, watching QVC, fuming in frustration, convinced he's going to starve to death.   He's suffered a lot - both physically and psychologically.  So I have compassion around that.  Just have to find a way to break through this fear of eating.

He woke up around 3 am with nausea and diarrhea.  So I gave him an anti-nausea pill this morning, along with his Protonix tummy medication.  He wouldn't agree to eat anything before I left for work.  I jotted down the meager food intake results from Tuesday on the calendar and left it for the Home Health Care nurse to deal with.  

Chatted with her by phone after she visited him.  His vitals were all good.  Respiration good.  Her biggest concerns are the pressure point sore he has and his reduced appetite.  Skin and Eating have become our primary focus.  The skin is the largest organ, and if his bed sore breaks open, he's susceptible to infection which, with the whole pancreatitis issue, would not be good.  And his reduced eating is creating a situation where they'll threaten to put him on a stomach tube.  Any little twinge of pain or uncomfortable feeling and he stops taking in anything.  She plans to visit with him 2X a week, and eventually get down to 1X a week.  But she can't release him from care until that bed sore resolves because it is a potential danger to him.

God has sent many nutrition angels today.  Between Nurse Victoria, Health Coach Denise and many kind co-workers, I have many new menu items to try in an effort to get him to eat.  So I just have to go back and try again.   I'll cook/create whatever he wants, but I can't force him to eat.  It's really up to him now.  Hopefully the doctor tomorrow will speak straight and tell us what has to be done.  We'll get more accomplished if Hon and I are on the same team - right now instead of the War of the Roses, we're the War of the Food.

Day 27:  Nov 29 - GivingTuesday
The doctor clarified late yesterday that we can proceed to "liquid diet" which can be basically any food as long as it is pulverized into a pourable consistency.  However, if something doesn't agree with Hon's tummy, then we have to step back and resume just a clear liquid diet.  Stopped at grocery store to stock up new items since my last refrigerator stocking event was all low-fat items.  During stressful times, you have to find the humorous moments.  That came last night when I asked the store manager where I could find the Jello cups - meaning pre-packaged Jello.  He hurries down through the store, past all the "food" aisles to the paper goods section, and proudly hands me a package of little Jello Shot cups.   I think he's trying to tell me something!!

Hon had a fairly non-eventful day - thankfully!  He did all his exercises and did his housing walking twice.  He read his newspaper and enjoyed reading the cards he got yesterday - especially the annual Christmas card letter from brother-in-law Don in Nevada.  

Hon's total food intake yesterday consisted of 1 cup of chicken broth, 3 tablespoons of Jello, 2 small bottles of water, 4 oz gingerale and 8 oz Gatorade.  I feel guilty eating in front of him.  Last night I finished the Stuffed Cabbage Soup courtesy of friends Barry & Cheryl - the whole time Hon watched me.  I offered him just the broth, but he determined it probably had too much fat from the ground beef and he didn't want to chance it.   I'm finding that he's holding back on trying certain foods because he fears the pain will return.  I'm still concerned that he's not eating/drinking enough.


He slept well - no diarrhea, but he says he had indigestion all night which he has decided was a result of the Jello, so now he has that in his head and probably won't even consider eating Jello today.   So breakfast was chicken broth again, and I left a puree of apples & peaches for him to try for lunch.  Challenged him to try and drink more than yesterday.


Our fancy Ninja blender arrived yesterday thanks to Santas Robin and Helen in Wisconsin.  So tonight we are going to try pulverizing something.  I found frozen bananas/strawberries which I think we will combine with apple juice and give it a whirl.  If it doesn't work, there's always Jello Shots!


Today is Giving Tuesday - a day dedicated to giving back.  While Hon and I won't be doing much "giving" today, we are the very grateful recipients of the giving from others...expressions of care and support via cards, phone calls, emails, texts, Facebook messages - as well as visits to Hon, the much needed blender, and homemade soup.  We hope you are able to "give" back to your favorite charities or your community today, because we know how it feels to be on the receiving end!   As the saying goes...

Day 26:  Nov 28 - First Day of Buck Season

Normally today Hon would be at the hunting camp today in Perry County with his brothers.  They would have gotten up at some ridiculous hour to go sit out in the cold in the woods.  But this year is different.  The Perry County bucks are safer knowing the Dobsons are not in town.


Getting home on Sunday was more challenging - more traffic with everyone returning from somewhere after Thanksgiving;  no valet parking at the hospital;  and unfortunately what I thought would be a closer parking garage (right across the street) turned out to be one that doesn't have a contract with Jefferson, so no validated tickets and no discount.  $27 for 45 minutes.  And the guy who valeted my car changed my Sirius radio to some hip hop station.  Really?? He was only in the car for minutes!!   I did not tip him.  Poor Hon had to wait almost 20 minutes in a drafty lobby while I retrieved my car.  He shivered all the way home, even with the heat cranked up.

Hon was tired when we got home, but he did revive after a 2-hour power nap and did watch the football game on TV.  I just don't know what to feed him.  His discharge papers say "CLEAR liquid diet";  his nutritionist's paperwork just says "Liquid diet".  I sat in the waiting area of the drug store getting his new prescriptions filled, reading through 13 pages of discharge instructions.  And I still am not exactly sure what I'm supposed to feed him.    So I am waiting for his doctor's office to call me back.  For right now, we're sticking to clear liquids.  So he had hot tea with honey and lemon for dinner last night and today's breakfast was chicken broth.  Hopefully he will try the Ensure Clear for lunch, although he's already told me it's too sugary and he doesn't like it.

He now has a new med for the nausea - Zofran; another new enzyme supplement to help digest food - Creon; and a new med to protect the lining of his tummy - Protonix.   He also has to give himself daily subcutaneous (that's "under the skin" in normal speak) injections with a blood thinner called Lovenox as preventative for the possible deep vein thrombosis.  A lot of "rules" about that whole process!  Book and CD instructions...to review in my spare time!   I spent an hour last night charting out a meds schedule and marking bottles.  They also gave him Percoset...but I hid that bottle.  Stuff is bad news and we're only bringing that out as a last resort.

Had a little rough spell during the night with diarrhea which was disappointing since that had subsided and it didn't make any sense why he got that after drinking hot tea!  But his spirits were better this morning; he got up, showered, dressed by himself.  And he told me his plans to do his walking and exercises today.  I left him - sitting in his chair nursing his mug of chicken broth, his injection kit and his meds.  Our family room has turned into a Medical Office.


Overwhelming sadness last night.  It was triggered by watching a cooking demonstration on QVC for a fancy copper pan they were selling.  It just hit me that his/our whole way of living has changed dramatically.  My boss, who is always very wise, put it best today:  a person's daily routine - your getting up, your coming and going, the things you do, the food you eat, the places you go - is very valuable.  And you don't realize how valuable until that is all taken away.   Suddenly I think about all the favorite restaurants, banquets, parties, etc.  It was too much to bear last night - even ice cream was no comfort.


Next steps:  Follow up appointment (in Phila) this Thursday with the GI doctor;  Appt on Dec 13 (in Phila) with the Vascular doctor about the possible blood clot.



Day 25:  Nov 27 -  

Update:  12:34 - Hospital just called.  They deem him fit to release.  He told them he's nervous that the pain and nausea will come back.  Nothing they can really do - we've just got to figure out his food intake - what he can and can't tolerate.  It's going to be a long 3 weeks.

The discharge plan yesterday was canceled due to a set back.  They had the orders all written, but when they went in to the room, they found Hon in pain and nauseated.  He did not tolerate the Ensure that they gave him to drink.  He was dehydrated - again.  So the team decided no point in sending him home since we'd most likely be right back to the hospital in a few days, and we certainly don't want to repeat that process.    Nurse Lisa said he looks better this morning.  They had him on IV fluids all night, and he was walking the halls today with his IV pole.  She is waiting for the "team" of doctors/residents, etc. to decide whether he's coming home today or not.  
And so we wait.  I need diversion.  I think I will go check out flat screen TVs today.  He's going to have a lot of recuperation time.  Might as well have a new TV to make this 3 week waiting period somewhat bearable.
Good news...my "Santa" from Wisconsin is sending us a Ninja blender.  Thank you Santa Robin!  Now all we need is for the Elves to make a way to bring Hon home so that we can actually use it! 

Day 24:  Nov 26 - Small Business Saturday.  Frustrating day on Friday afternoon.  Battled through the traffic and auto accidents in and around Limerick Outlets and King of Prussia Mall to get down to the City, stayed for 3 hours, only to get no face time with Doctors or Nutritionist.  When I got there, Hon had just returned from an Ultrasound to look at this possible blood clot.  He was tired and cold.  Apparently all testing rooms are kept at subzero temperatures.  The test only took 30 minutes, but no one came to pick him up for 45 minutes to bring him back to his room.  He actually asked for 3 blankets he was shivering so bad.  For a guy who wears t-shirts in the winter, this is a change for me!

We missed the Nutritionist who left a new set of eating rules for us.  Whereas before we were told "no fat" diet, now they want an all-liquid diet but to incorporate foods to build up calories.  The first list said NO cheese, butter, whole milk, peanut butter, desserts, chips, buttery crackers, etc....now the NEW list says "Good News...any food may be eaten as long as it is liquefied, thinned or blended with a blender and strained."  They even list chili, lasagna and mac-and-cheese - as long as it is blenderized with enough liquid to make it pourable.  Somehow pourable lasagna just doesn't sound that appealing.  

Bad News...he has to be on this full liquid diet for several weeks.  I think Santa is going to have to bring me an early Christmas present - a Ninja Blender.


The ultrasound for the blood clot is still inconclusive - they can't really see it because the darn pseudocyst is in the way.  The "clot" appeared on the imaging in last couple of weeks.  It's not an urgent concern, but they have now brought in the Vascular Team to consult.  They are recommending daily self-injections of Lovenox - used to treat or prevent a type of blood clot called deep vein thrombosis (DVT), which can lead to blood clots in the lungs (pulmonary embolism) - for 2-3 months.  I immediately Google "Lovenox" and read up on the side effects - I'm very wary of medications now that we think his meds are what got us into this mess in the first place.  Must be like gold...the co-pay is $200/month!

His Internal Medicine doctor said he's feeling better today, and the diarrhea has subsided.  So there's really no "clinic reason" to keep him.  Once we get approval from the insur for the blood thinner, and they teach him how to do the injections, there's no reason to keep him.  So he may get sprung later this afternoon or early evening.  


I'm sure traffic going into the city on a Saturday night is going to be just peachy!

Day 23:  Nov 25 - Black Friday.   After a delicious lasagna dinner at Mom's last night - thanks to brother Rick - went down to the city to see Hon.  If you ever want to travel to Center City, Thanksgiving night is the perfect time - hardly any traffic, all kinds of empty spaces in parking garage, and nobody walking around on the streets!  It was almost as if I had the whole city to myself!  Hon is in a different wing, but same building as when he was transferred from Jeff ICU.  At least his room is bigger - no more broom closet.  And he has a wonderful view - William Penn is watching over him.  Hon only gets to see the view when he's walking back from his bathroom, but hey, it's better than the brick wall he had to look at in the last room.  

He was laying in the dark and was pretty much out of it last night.  The nurse had just given him morphine because she could tell he was in pain, and she said that is counter-productive to his healing process.  His Thanksgiving meal consisted of chicken broth for breakfast, beef broth for lunch and chicken broth for dinner.  He's getting his new Zofran med by pill every 6 hours for the nausea, but doesn't seem to be doing much.  All the nursing staff brought in covered dishes for their Thanksgiving feast.  Since his room is right next to the nurses' station, he got to hear all about the sweet potatoes, pumpkin pie, etc. - all while he was staring at his chicken broth.  That was a hard pill to swallow (pun intended).

He was bummed out - kept talking about how he won't be able to go hunting, won't be much help to me at Farm Show (January) and won't be much help at Fair Convention (January).  He has an overseas trip scheduled for April and he's afraid he'll have to cancel.  Tried to tell him to wait until end of December and we'll see how things go.  Guess these things stay on his mind because he has nothing else to do but lay there and think.


Jeff doctor called today, Friday.  Vitals are still good.  Diarrhea has subsided.  They tested again for infectious C-Diff and it came back negative for the 3rd time.  So the diarrhea is definitely a result of the fact that he doesn't have enough pancreatic enzymes to break down the food and so everything goes right through him -  malabsorption.  They were considering doing the cyst draining procedure today because it's causing Hon so much discomfort, but the radiologist determined that the cyst is not mature enough - it's too risky to drain now and risk infection entering his body.   So they will be starting him on the supplemental enzymes, full liquid diet, and having the nutritionist consult on how to get more calories into him.  Most likely he's going to have to be on said full liquid diet for the remainder of the 3-4 weeks while we wait for this cyst to get tough enough to withstand the stint procedure (insert big sigh here!).  Doctor did mention they may add Ensure to his diet.    They are scheduling an ultra sound to re-image the area where a blood clot may or may not be in his splenic vein (abdomen).  The possible bowel adhesion problem is on the back burner until they get the pancreas situation and the nausea/diarrhea under control.  Again, too risky to go in and try and remove any adhesions at this point in time.


At this point, they are thinking he'll be in Jeff until next week.  I'm headed down this afternoon and am taking him the get well cards that came in the mail.  Hoping that will add a little bit of positive energy.  Thanksgiving Day may have been insignificant for us this year, but we are so very grateful for everyone who has reached out to us during this dark time - cards, notes, phone calls, emails, text messages, Facebook posts, offers to cook, drive, help with projects, etc.   These expressions of care and concern are constant reminders that we are not alone in this journey, and that Hon is truly loved by many.



Day 22:  Nov 24 - Thanksgiving 2016.   No turkey in the oven, no pies to bake.  Just me and pet Smokey wandering around our house trying to figure out what to do today.  Go to city (well me, not Smokey!), don't go - there's a huge parade in Phila and probably a zillion people.  Go by car?  Try the train?  My morning is filled with text messaging many people trying to help me with the decisions.  I call down to Jeff, and thankfully, the doctor calls back and takes the time to explain everything.  So here's our latest update:


Problem 1 - Hon's CT scan shows that he has developed a rather large pseudocyst.  It measures 17 cm by 8 cm and is compressing on his stomach.  This explains the sensation of always being "full" and the indigestion/nausea.  A pseudocyst is generally a post-pancreatitis occurrence with necrotic pancreatitis (tissue damage).  Right now the cyst looks like a water balloon - very thin skin filled with fluid - like an abscess.  He needs a procedure done where they scope down and drain it.  Bad news - it needs to mature to where the cyst skin is more like an orange rind - thicker and harder.  This takes 6-8 weeks.  Ugh.  We're only on week 2.  So they are putting him on Standing Zofran every 6 hours to help combat the nausea until we reach that goal.  The procedure will involve going in through his stomach and inserting a stint between the cyst and stomach so that all the bad stuff in the cyst will actually drain into his bowel.  This eliminates the need for an external drain which is prone to infections, etc.  It's a state-of-the art procedure that's only been around a few years.  Jeff's GI Dr Siddiqui has performed it before.


They are trying liquid diet today and will not release him until he is able to tolerate low fat diet.  Considering we were on "no diet" yesterday, not sure how that's going to go.


Problem 2 - His pancreas is now not secreting enough enzymes to help digest his food.  His level is only 91.  Hey, it beats 36,000 that we had on Day 1!  But now what little food he does eat doesn't get digested properly so his intestines can't absorb and everything goes right through him - hence the diarrhea.  It's called malabsorption.  So they are putting him on Creon - supplementary enzymes to help with digestion. 


Problem 3 - The CT scan review noted a questionable thrombosis (blood clot) in his stomach vein.   Jeff's radiologist is still revewing.  It could just be a change from the cyst/stomach compression issue, or it could really be a blood clot.  Hon has always said his pain is right at the bottom of this stomach, so it's possible.  They are keeping a close eye on that.  If it is a clot, they will administer anti-coagulants or heprin. 


Problem 4 - Localized Pain in lower abdomen.  They are checking to see if he has adhesions in the bowel.  They've tested for C-Diff and bowel obstruction several times in last 2 weeks, and always results come back negative.  But because the pancreas is so damaged, it may have created these adhesions in the bowel.  So keeping an eye on that, too.


Problem 5 - Medications that may have caused the pancreatitis.  Originally they told us STOP TAKING Zetia and Metformin.  But then his discharge papers said Zetia and Quinapril.  When I questioned the nurse, they checked with the Jeff GI dr and she said Metformin was ok.  Now they say they didn't realize Hon was on a combination pill of Pioglitazone & Metformin.  The Metformin by itself is ok...but the Pioglitazone is known to cause pancreatitis.   So now we need to remove that med from the list as well. 


Plan for today is clear liquid diet, nausea medicine, pancreatic enzyme supplement and figure out the possible blood clot and bowel adhesions.  Hon can't come home until he's able to tolerate a full low-fat meal. 


Then we wait for the 6-8 week mark to schedule this scope/stint procedure.  Check your calendars, folks.  That put us right between Christmas and New Year's.  Did I mention that Hon's birthday is Dec 23??  I was going to give him a flat screen TV.  Sounds like he'll be back in the hospital.  Sometimes in the dark, but never at a distance.



Day 21:  Nov 23 - Hon looks at me as I'm getting him up and says, "Something is wrong".  He was up all night with diarrhea and is wiped out.  He has a pain level of 3.  He won't take any meds because he doesn't want to eat or drink.  His Home Health Care nurse Victoria visits today and I leave a list of questions/concerns since I'm at work.  She contacts his Jefferson GI team and they are concerned about dehydration.  I am to take him to the ER right away.  Bayada Victoria alerts Phoenixville ER and Jefferson team wants a consult with Phx ER dr right away.  Everyone is working together to make this as painless as possible.  After 5 hours in ER, Jeff doctor makes the call - he's got to come back to Jeff.  They offer more sophisticated treatments and procedures than Phx Hospital can do.  Hon's face immediately goes into dejection mode.  "I don't want to go," he says quietly.  I have to go into cheerleader mode and remind him of all the benefits of Jeff.   I don't think I earned my pom-poms;  he doesn't look convinced.  8:00 pm - transport comes and takes him away - again - he's on his own tonight.  And I feel like the worst wife in the world because I'm too chicken to drive to Phila on the eve of the biggest travel day - and the biggest bar night - of the year.   I go home dejected, too.



Day 20:  Nov 22 - I'm lucky if I can get him to drink 1/2 bottle of anything.  Takes him an hour to eat a cup of anything.  Diarrhea is worse.  He says as soon as he tries to eat or drink, he feels nauseous.  And the pain in his belly is back.   I see a hospital visit in our future.  Definitely don't see a turkey dinner in our plans for Thursday.  Sometimes in the dark, but never at a distance.

Day 19:  Nov 21 - I think we're experiencing a relapse.  Hon will not drink anything.  I called his Home Health Care Nurse to let her know he's not tolerating food or drink, and the diarrhea is getting worse.  He texted me to tell me he's on the BRAT diet.  Now Hon isn't a very good texter, so sometimes you have to buy a vowel to figure out the message.  But I looked it up - it's for real.  BRAT means Bananas, Rice Applesauce and Toast.  Also recommended Gingerale.  So much for all the fruit and veggies and soups I just bought.  Well, at least I'm eating healthy!  Back to the grocery store I go.

Day 18:  Nov 20 - Hon very quiet today.  Said he had a lot of indigestion during the night, and the diarrhea has resumed.  Not interested in eating today and didn't want to drink much.   He belches all the time.  Doesn't seem to be feeling that great.


Day 17:  Nov 19 - Best day yet!  Hon ate very small meals, but he ate 3 meals and drank almost 3 bottles of water.  Still feels full all the time, but he's doing his exercises and starting to be like himself.  He's down to 189 lbs.  I think we're on the road to recovery! 



Day 16:  Nov 18 - Physical Therapist Lorraine came today.  Smokey really likes her - especially all the gizmos in her bag.  He tried to steal her thermometer - he's such a klepto!   She did an assessment on Hon and he even passed the 6 minute around-the-house walking test!  She gave him some exercise instructions and he's to do his walking 2x a day, inside.  She doesn't think he'll need very much PT.  Heck, we've already mastered the shower and dressing routines ourselves.



Day 15:  Nov 17 - Bayada Home Health Care Nurse Angela came out to assess Hon.  All his vitals are good -

97.2 temperature, 92 Pulse, 92% O^2, 128/80 BP

and he's down to 205 lbs.  So he's losing the fluid, slowly.  She recommends 2-3 wellness visits and PT.  He's also developed a bed sore, so we have to watch that it doesn't get worse.



Day 14:  Nov 16 - Now we have a new routine.  Getting Hon up is an hour-long process.  Any activity requires rest periods in between.  He's not too interested in eating and I have to bribe him to drink water.  What happened to the guy who was trying to coerce the janitor into buying him water?  I bought him snazzy lounge pants because he doesn't fit into his jeans.  His belly is still so distended from all the fluids.

Day 13:  Nov 15 - Doctor called at 2:30 pm to tell me Hon is being released.  Rather shocked.  I don't feel he's ready, but they say clinically, he's fine.  Hmmm - what about the constant pee-ing and diarrhea?   Back down to the city, load him up, with the urinal as a "just in case" backup plan, and we start the 2-hour commute back home at 5 pm on a weekday.  When I was driving down, I prayed, "Lord, please build a pocket of protection around me...make it so that traffic moves along and every exit and on-ramp are easy to navigate."  I made it down to Center City in 45 minutes - the first that ever happened since this whole nightmare began.  Coming home there were no back ups, no delays, no merging issues - it was clear sailing.  By the time we got home, Hon was wiped out.  He looked like he just ran a marathon.  But he was very content to be back in his surroundings, quiet, and with pet Smokey.  Sometimes in the dark, but never at a distance.

Day 12:  Nov 14 - Made the trek down to Center City to find him staring at a plate of stuffed chicken breast, rice, mixed veggies, cream of broccoli soup, iced tea and milk.  Really?  The man hasn't eaten in 12 days...how did we go from NPO to full course meal?  Luckily the Dietician stopped by and gave us the low down.   Somebody got their signals crossed - even she was surprised.  But he's now on a low fat diet - no butter, no cream-based sauces, soups, no pastries, cookies, etc,, no fatty meats...in other words, NO FUN.  He's allowed to have all the fruits, vegetables and bread he wants.  Oh, and pretzels.  I now know what I'll be doing tonight - throwing out everything in our fridge. Sometimes in the dark, but never at a distance.

Day 8:  Nov 10 they determined he didn't need ICU.  So he was transferred to a regular room in the Thompson building which was a block down from where he had been.  This presented a new routine.  Different route, change in parking, and much different accommodations.  It was now more like Motel 6 than the penthouse.  Room was small, his view looked out onto a building wall, and it felt like he had been moved to the utility closet.  But the staff continued to be encouraging and kind.  And the medical doctors were never too busy to stop by and talk.   There was still concern that Hon was still NPO (no food), very tired, and now had diarrhea.  More xrays, more tests...worried about CDiff - a specific kind of bacterial infection that causes mild to life-threatening forms of diarrhea and colitis,  With everything else going on, we sure didn't need that!  Thankfully the tests came back negative. 

**********************

Day 1:  Nov 3, 2016 - So we've been given a new reality to deal with.  Kenny aka "Hon" was admitted to Phoenixville Hospital with severe pancreatitis.  His Lipase enzyme level (aids in digestion) should have been 200 or less;  Hon's was 36,000.  That's Hon - when he does something, he does it big! 

When they asked him for a pain level - he says "10".  Wow.  The pain was so intense that they had to put him on morphine every hour.  He developed a fever and his vital signs were getting worse.   His pancreas was so inflamed, and secreting so many enzymes that they were attacking his vital organs and his pancreas was becoming damaged.  They call it necrotic pancreatitis - pancreatic tissue was dying.   He was moved to the ICU unit for closer monitoring on Nov 4.  After an MRI, his attending physician made the call - Hon needed to go to Thomas Jefferson University ICU immediately.  Phoenixville had reached their limits with what they could do.  He needed specialized care and quickly.  Hon got an chauffeured ride in an ambulance transport.  I got baptized by fire learning to drive myself to Center City, alone, on a Friday night.  I think he had the better deal.

ICU in the city at 10 pm at night is a very lonely and scary place.  The room looks overwhelming with all its equipment.  Hon looked so fragile being hooked up to so many IVs, tubes and monitors.  And everyone moved in an out of his room quickly.  I suddenly realized we were in a very serious situation.   The kindest person I met that night was Jessie the technician who brought me a recliner chair and rearranged Hon's room so that I can could sit by his bed.  He was my angel that night.

I once heard a commentator on my Christian radio station quote this:  "God is sometimes a God who hides himself but never a God who absents himself;  sometimes in the dark, but never at a distance."  That quote kept coming back to me as I looked out onto the dark skyline from Hon's ICU room.  Sometimes in the dark but never at a distance.  We were in a very dark place at the moment, but I clung to the faith that God was in control and that he hadn't left us.  He was working things out for Hon's good.

In most times of stress, you have to look for the shining lights - the positive points.  The one shining light about Thomas Jefferson University ("Jeff") was that it was a teaching hospital.  So you don't just get 1 doctor;  you get a team of doctors.   Medical team - 1 doctor, 6 residents and 2 fellows;  GI Team - 1 doctor, 1 fellow;  Surgical team - was on standby the whole time he was in ICU.   A lot of faces and names to remember.  But as the GI doctor said to me, "It's not your job to remember who we are, it's our job to make sure you know who we are!"   I was actually invited to be part of Rounds and was allowed to ask and answer questions.  They really made me feel like we were all in this together to make Hon better.  Sometimes in the dark, but never at a distance.

There are a lot of rules in ICU...and we heard, "You can't..." a lot!  So we had to stop doing things ourselves and let the nurses/technicians do for us.  Hard lesson for people who are very self-reliant!  In ICU a nurse is only assigned to 2 patients.  So you get a lot of attention and they are very in tune to everything that is happening.  If I even mentioned that I thought Hon was acting out of sorts, they were on the phone immediately to a doctor.  It's kind of like being in the penthouse of a fancy hotel - you're treated like a VIP, only you don't get a chocolate on your pillow at night!  



The common causes for acute pancreatitis are gall bladder and alcoholism.  Quite a combo!  Unfortunately Hon didn't qualify for either one.  His gall bladder was removed a few years ago, and he's lucky if he has 1 beer a month.   So the search began with teams of doctors to find a reason why he became so ill so quickly.  His GI team determined it could be from cholesterol and pre-diabetic meds he had been taking:  Pioglitazone/Metformin, Zetia and/or Quinapril.  They quickly stopped all those meds.   We just couldn't understand how meds that are supposed to improve your health were now the enemy.  Sometimes in the dark, but never at a distance.

The only treatment for Acute Pancreatitis is flushing out the digestive system by massive amounts of fluid and pain control through morphine.   Hon received 8 bags of IV fluid in 1 day.  Problem was, he only pee'd out 1 bag's worth, and he hadn't pooped.  He weighed 213 lbs..normally he's 195.  He was now on fluid overload.  It was affecting his blood pressure and respiration.  So his care escalated to diuretics, urinary catheter, enemas, an NG tube down into his stomach and a BiPap breathing mask.    The penthouse now wasn't so much fun, especially the 5 tries and 1 hour duration to insert the urinary catheter!   But they had to get the fluid out of him.  The worst part was the NPO orders (nothing by mouth).  He was desperate for water - even tried to get the Housekeeping aide to go buy him a bottle of water.  It was tough love.

After a week, he showed signs of improvement.  His vitals improved and he was scheduled for Physical Therapy.  He sat out in his chair and FINALLY was allowed small sips of water.  Considering he hadn't been out of bed in a week, and hadn't eaten anything, he did really well.  But he tired quickly.   I was showing signs of improvement, starting to get the hang of navigating the Schuylkill Expressway, parking in the parking garage, and adjusting the daily schedule to include work, hospital, Mom, our pet cat Smokey and sleeping.  I couldn't allow myself to tire out...had to keep going and stay strong.

SCROLL TO TOP TO GET LATEST UPDATE.