September 30, 2013

Dave’s Drs have just come back and reported that the biopsy they just performed looks good so far.  They don’t see any signs of rejection, and feels the pathologists report will come back the same.  The tissues look good.

They also fixed his feeding tube.  It had worked its way up next to his voice box, now they have clipped it to his small intestine.

Tomorrow he goes down for a liver biopsy to see how that organ is doing.  Hopefully he will then be done with tests for the week.


September 29, 2013

Dave finally is free to roam Duke.

Dave finally is free to roam Duke.

Dave’s meds seem to be doing their job. He has a couple of tests scheduled for tomorrow to confirm, but visual checks (ostemy output) indicates the steroids have reversed the intestine rejection. We expect positive results tomorrow.

The steroids have had the expected side effect of making Dave “jittery”. And that is describing it mildly according to Linda. Dave feels like he is going to jump out of his skin. His hands shake and he has an enormous amount of energy that he keeps trying to walk off. Caution needs to be taken so he does not over do. The meds are being adjusted to minimize this side effect. They also tend to make him very emotional. But as you can see he is beginning to look like his old self again. Minus a few pounds.

New area finished while we have been here at Duke

New area finished while we have been here at Duke


September 27, 2013

The news about Dave is not so great today, but all of it can be handled with medications.

First, he is showing signs of bowel rejection. Yesterday’s biopsy revealed the small intestine is showing mild rejection. This is being monitored closely. The ouput thru his ostemy is the visual sign of rejection which signaled the biopsy was needed. Meds should reverse this rejection.

Second, he has some fluid retention. A pocket of fluid in his abdominal cavity shows a small amount of infection. More antibiotics are being administered to handle this.

Third, his liver enzymes are elevated slightly, but may be from the TPN, which is Dave’s nutrition in a bag. The Drs will continue to monitor this closely. There is no sign of rejection here.

Dave got his walking done for the day BEFORE all of the above news was received. Linda and Dave hit the Duke store on the hospital campus and family members will soon be donning their Duke gear in support of the great job the Duke team has done and continues to do for Dave. This task was high on Dave’s to do list.

The 2nd item on his “Duke” list is planning a thank you for the unit before he leaves, whenever that might be.

Linda and Dave also had their first education session today on what to expect after discharge. They found out today that Dave is their first long distance patient for a bowel transplant. He will need to stay in the area at least 3 months after discharge. A plan for his care after returning to Florida still needs to be figured out. Plus he will need another surgery in 6 months to reverse the ostemy.

Some things we learned about the critical first 3 months after discharge (highest risk for rejection period) are: No kissing, hugging or handshakes. No crowds. No buffets. Suggest movies during matinee times and shopping malls on week days, not weekends. Weight, temp, food intake and output will be monitored daily and reviewed during weekly clinic visits. Weekly lab visits are required in addition to weekly clinic visits.

Prayers have been answered getting Dave thru surgery, but it looks like he still needs more to help get over this newest hurdle. Dave is in good spirits and is confident this is only a minor set back, all will be good.






September 25, 2013

Dave finally had the feeding tube inserted today.  He is doing great.  He will be eating regular food along with getting nutrition through the tube.  Drs. want to keep him on a 2800 calorie  a day diet To get some weight back on him.

He has gone from 14 IV lines down to 3 now.   His pain continues to be kept under control and he his sleeping through for the first time in many months.

“I feel like a million bucks!” Is what he posted on Facebook today.


September 24, 2013

Dave did not have his feeding tube put in today as originally planned.   It has been rescheduled for tomorrow.  He had a much better day today, his pain level was at the lowest  since his surgery.  Hopefully his sleep will improve with this.  He lost a few more IVs today also. He soon will be able to roam the entire hospital.

September 23, 2013

Today has been an emotional roller coaster for Dave.  The Drs.  are starting to wean him from meds by IV to meds by mouth in preparation of sending him home in a couple of weeks.  They are also attempting to decrease his pain meds, trying different combinations to see what works best for him.  Unfortunately, his pain has increased because of this.  His pain mixed with interrupted sleep patterns is making for a very emotional day.  Like any other hospital, it seems as though he will just drop off to sleep, snoring nicely and someone comes in to take or give or hook up something.

Please direct all prayers towards his pain and emotional stress today.

Dave continues to impress the staff with his three daily races around the ward.  Each floor is set up in a triangle, 17.5 triangles makes a mile. He has been walking 10 triangles, 3 times a day.  I say races, because thats just what he does. Race, no leisurely stroll.  The nurses continually comment on his speed.  It definitely takes some effort to keep up with him.   He says his goal is to walk a 5k with me on November 2, at Victorious Praise Church here in Durham.  So get ready to sponsor him!

Dave had all the tubes removed from his neck about 30 minutes ago.  Another step forward!

Dave is getting his daily school report from Mackenzie.  Minus his tubes in his neck.

Dave is getting his daily school report from Mackenzie. Minus his tubes in his neck.

Dave’s triglycerides were around 400 today.  This is extremely low for him, since his daily average is 2800-5000 since birth.   Another good sign that his new liver is creating the enzyme he has been missing.

Dave is scheduled to have a feeding tube inserted in through his nose tomorrow.  But  he is also awaiting his first tray of real food at the moment.  The Drs. feel he needs both to get enough calories in him.  So his day will end on a good note with his dinner of white rice, mixed veggies, applesauce, chicken and cornflakes.

September 21, 2013

Dave & Nila

Dave & Nila

Our special new friend Nila came to visit Dave to day.  She has nicknamed him Ironman.

All things are good today. Test results so far are as follows:  Biopsy has not officially come back but the Drs reassure Dave that there is no sign of rejection of the small intestine.  They have placed him back on NPO just a precaution.  Today he had an ultrasound for fluid in his abdomen. Later they drew some fluid from his abdomen to send down to be tested.  Nothing to be concerned about at this time.