November 26, 2013

Playing video games with his backpack buddy by his side.

Playing video games with his backpack buddy by his side.

Good news!  It’s been a long 2 weeks but Linda finally got Dave home from hospital about 7:00 last night. Probably a close contest as to which one is more tired of being there but Dave probably does get the win!

His weight continues to be an issue. He was back down to 105.2 lbs at time of discharge. The fluctuation is mostly due to fluid. He is still on nasal tube feeds. His liquid nutrition runs 18 hrs from 6:00 p.m. until noon daily. He wears a special backpack outfitted with a pump and a large IV bag filled with nutrition similar to Ensure. It is infused with all the nutrients he is deficient in. The IV nutrition (TPN) has been discontinued. It was causing some issues with elevated potassium levels, elevated triglyceride levels, elevated glucose levels and elevated liver enzymes. With Dave it is a constant balancing act.

Dave will continue with his 3 daily IV antibiotic infusions at home. He will also have weekly visits by his home healthcare nurse to check on him and change out his power port (his IV site). Dave will continue with his weekly blood draws, and clinic appt with 4 members of the transplant team, plus a weekly biopsy of the small intestine.

 

 

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November 22, 2013

 

 

 

 

 

 

 

As of today, Dave is still in the hospital. He is doing well but won’t be released until Monday or Tuesday. The antibiotics are doing their job. The IV nutrition ( TPN) and tube feeds seem to be doing their job as well. He weighed a whopping 109 lbs this a.m.

 

Real food is finally going to be reintroduced today. Fat free, lactose free, sugar free everything. If all goes well tonight and tomorrow and his drains are clear of fluid, the Dr. will start to remove the 3 drains saturday. Dave should be home in time to eat some turkey and mashed potatoes on Thursday.

 

We will have much to be thankful for.

 

 

 

 

 

 

 

November 14, 2013

Sorry we have been quiet for so long.   It’s been a busy week.

After such exciting news about Dave completing the 5K walk last week, I have to report that Dave has suffered a set back this past week and we must again ask for prayers and good thoughts. Dave is back in the hospital.

Dave was admitted to Duke on Sunday with severe abdominal pain. Turns out, he has a severe case of ascites (infected lymphatic fluid build up in abdominal cavity), once again. This was determined Monday afternoon and as soon as an OR was available, David was in it. They tried earlier in the day to place drains via Interventional Radiology with no luck. The Drs. were able to perform surgery laproscopically. The infected fluid was removed and adhesions were cut away to minimize the number of small pockets that had formed, allowing infected bacteria to form. He then had 3 drains inserted. So he now has 3 more holes punched in his stomach and 3 more pieces of jewelry hanging out of his belly. Solid food and his liquid tube feeds have been stopped due to the infection. His belly must be at rest.

Now, here is where we have run into trouble. Dave also has an infection in his blood stream. This infection means he also cannot get nutrition via IV. So no table food, no liquid food thru feeding tube and now no TPN nutrition thru IV.

Dave has had no nutrition of any kind since his bowl of cereal Saturday evening. He is now down to 104 lbs. Besides the weight loss, Dave is very weak and disoriented. His team has been put in a tough position. Feed him in any form and he will die or he will die from malnutrition. (Linda’s quote verbatim from doctor) In order to feed him without harm, he must have positive cultures for a 48 hr period. He is being monitored very closely as they know they are walking a very fine line.

Dr. Sudan assures us this is not unheard of with small intestine surgery. It is the worst of the road bumps and if he stays emotionally strong he will win this battle. Dave is struggling emotionally this time. He seems to have lost some of his fight, but then again, he is literally starving. Infections are the enemy in all surgical patients.

Good news, maybe. When his team left his room at 2:00 pm., it was looking like we would hit the 48 hr goal. In anticipation, they have input the orders for a PIC line to be inserted. This way, when we get the word, the TPN (nutrition by IV) can be started immediately. He may also be able to have clear broth.

Dave needs all your prayers to help him get through this rough patch.

And we trust he will.

November 2, 2013

The day of the race is here!  Dave and I were up early this morning to make sure he had time to pack all his meds He would take along the way.  He has to take them at certain times.  I was grateful it was cool, Dave was freezing. Although he soon warmed up enough to shed the camo.

Pre race warm ups

Pre race warm ups

Everybody warm up

Everybody warm up

Pastor Wil and Dave and the start line.

Pastor Wil and Dave and the start line.

Pastor Wil introduces Dave to the race participants.

Pastor Wil introduces Dave to the race participants.

Wellness check on Dave, he refused every offer of a ride.

Wellness check on Dave, he refused every offer of a ride.

Dave and Mother Ann, his walking partner.

Dave and Mother Ann, his walking partner.

Dave gets some encouragement for the last leg.

Dave and Ann get some encouragement for the last leg.

The end is in site, everyone has come out to cheer Dave and Mother Ann on.

The end is in site, everyone has come out to cheer Dave and Mother Ann on.

Woohoo!  We made it.  Dave is in the middle of the celebration.  I cried of course.

Woohoo! We made it. Dave is in the middle of the celebration. I cried of course.

Pastor Wil recording Dave's achievement.

Pastor Wil recording Dave’s achievement.

After the race

After the race

 

Dave refused to give up.  It was tougher than we thought because of the hills and valleys, but both Dave and Mother Ann were determined to make it to the end.  They talked and encouraged each other all the way through.  When we got to the last leg of the race, down the street from the church, even the police were cheering  him on.  Elder Johnson stayed right behind us, making sure we were safe since we were well behind everyone else.  As we approached the finish line everyone came out cheering and clapping, some even came to walk the last part with us.

Dave is very proud he was able to finish and we now have a new walking partner in Mother Ann.  We hope to meet a few times a week at the church to walk again.  Mother Ann had not even walked a mile before today, and today she did 3!!

Dave is back home and resting and feeling great except for being tired.

We stopped for dinner on the way home.

We stopped for dinner on the way home.

 

 

 

 

 

 

 

 

 

 

 

 

 

November 1, 2013

Just a quick note to let everyone know that Dave is home once again.  They released him at 8pm tonight.  He has been given the okay by his Drs to participate in the 5k walk he has been training for.  Much to Nicholas’ relief.  Dave’s cousin Nick was prepared to walk in place of Dave if needed.

I will post pictures of the walk tomorrow.