October 26, 2013

A slight setback this week landed Dave back at Duke, but nothing too serious. A couple of events led to this.  First, his blood draw on Thursday showed an elevated potassium level.  A few things factored into his increased potassium level,, non of which is anything Dave did or ate.  The Drs ordered a “cocktail” be administered in order to bring it back to normal. This is what they called it and Dave saw immediate results.  We have no reason to believe this will happen again.

Dave follows all the rules for his restricted diet.  He realizes the better behaved he is now, the sooner he will be back to eating normally.  Many of Dave’s close family and friends know that this is something he struggles with.  Dave LOVES to eat, but is doing great in this.

Dave’s weekly biopsy last Thursday showed a slight rejection of his small bowel once again.  This has happened a few times now and seems to be easily taken care of with increased anti rejection drugs. They will retest on  Monday.

Finally, Dave’s feeding tube seems to have come loose from where it was clipped to his intestine once again.  This causes him some nausea which in turn causes him to eat less. Dave cannot afford to eat less.  He hopes to have that fixed ASAP.  If anyone happens to call him right now you may notice his voice sounds odd.  The feeding tube seems to be resting on his vocal cords.  His voice sounds shakey, almost as if he is trying not to cry.  Rest assured, this is not the case.  He was not even aware that his voice was altered.

If all goes well, Dave hopes to be home again Tuesday.  I will let everyone know when he returns.


October 23, 2013

Dave and Chantel

Dave and Chantel

It’s been busy few days since Dave came home from the hospital.  We seem to have him organized with meds and appointments. Monday’s clinic appointment went well.  Drs were very happy with his progress and started adjusting his meds.  They will start decreasing them a little at a time.  They do want Dave to put on weight a little faster so they decreased the length of his tube feeds, allowing him to eat more regular food.

His cousin Chantel has come to cook for him for a couple of weeks.  Yesterday he ate 2 chicken tacos, with black beans and rice.  Previously, he would have stopped at 1/2 a taco. Tonight she made him sweet sausage and rigatoni with sauger free apple pie.  He is currently trying to convince her to move here to cook for him everyday.

Dave celebrated his 36th birthday Sunday by attending church for the first time since his surgery.  Everyone was thrilled to see him doing so well.  Pastor Wil was thrilled to be able to introduce the man he has talked so much about, to the congregation.  Dave was then baptized.

Later we went to Hilsboro for North Carolina BBQ. All in all a great day.

October 16, 2013

David comes home!

David comes home!

David is out of hospital!   Linda and Dave arrived at our home away from home , the apartment, along with him came 16 bottles of pills ($1,000 – ouch!). and his ever present feeding tube.       We are awaiting arrival of home healthcare nurse to access Dave’s power port and to get him set up for his IV treatments.  He will have a daily IV infusion to treat a fungal infection (in the fluid accumulation in belly) and 2nd IV infusion 3 times weekly for iron replacement.  His feeding pump will run from 6:00 p.m. To 12:00 noon daily.   The feeds run off a pump hidden in a back pack so he can be mobile.

Schedule wise – Dave will be seen at the transplant clinic as an outpatient,  weekly until further notice, approximately 3 months.

The next two months are still a high risk for rejection, but all looks  good, so no reason to think negative thoughts.

Dave is celebrating his 36th birthday on Sunday, Oct 20th.   He can’t have cake or ice cream but it will certainly be a day to celebrate considering the uncertainty of his future just a few short months ago.     Go to the contact page for our address for any who would like to send b-day cards.

Also,  Dave’s monthly prescription costs are enormous along with his continuing health care.  Unfortunately, insurance does not cover all these costs, so the burden falls on Dave and Skye.   I would hold a fundraiser for him, but it has proven difficult for me to be both a caregiver and fundraiser.   I welcome any and all help in this area.    Whether this help comes in the form of a fundraising event, or simply a donation.  Please see Donations page for information.

c’mon if young Avery can do it for Dave, so can you.    We really need your help and ideas.

thank you,

Aunt Kathy

October 15, 2013

Dog therapy

Dog therapy

Dave is pretty frustrated again today about not being released from the hospital, but it does look like tomorrow will be the day.

The delay was caused by a few things and Drs. feel much better to be cautious.
Some of the causes for the delay are, increased output signaling need for 1 more biopsy and another adjustment of some meds.  Dave’s iron content was very low  so he needed iron by IV.  He has fluid  in abdomen again  so another ultra sound is required to verify quantity – looks to be about 1.5 litres.  (friday Dave had 4.4 litres of fluid drained equal to 8.8 lbs of weight. )

Dave has since lost another 4 lbs in addition to the 8.8 lbs. This also concerns the Drs.   He is now down to approximately 110 lbs.

The highlight of Dave’s day was another pet therapy visit.  This time by “Kylie” a very sweet black lab.

They also removed the last of his external 75 staples  today.

Dave is being released with the full understanding of the list of things that could occur, causing him to be readmitted.     He will have a home healthcare nurse to monitor his tube feeds (he does have a nasal feeding tube) as well as all of the other items listed above several times per week.   He will also have 1 or 2 clinic appointments per week for approximately 3 months.

Dave’s limitations upon discharge are no driving and no lifting over 5 lbs.  Diet wise, he is temporarily restricted to a fat free and sugar free diet, along with the liquid tube feeds.

Fingers crossed that Linda will be bringing him home to our apartment tomorrow.





October 10, 2013

Electra saying hello

Electra saying hello

Dave’s day just got better. Electra, a therapy dog came to visit.   She did a great job.  Dave is currently trying to talk her owner into letting her spend the night.




I would sleep great if you left her!

Electra very content

Electra very content

Now for some results.  As of today, no signs of rejection anywhere.  Chest xrays came back clear.  His liver numbers are good.  They are switching some meds to oral form for when he goes home, which has caused some fluctuation in his numbers.  Drs said they are looking for the right combination.  Example, the patch they put on Dave for his blood pressure is too strong, they are switching to pill form so it can be better regulated.  His white blood count is still elevated, but have found no sign of infection anywhere.  They will continue to search and rule out causes one by one.

At the moment, he is not hooked up to any IVs.  We took a walk without his buddy, the IV pole.  In preparation for the walk up to our 2nd floor apartment, Dave walked down one flight, and up 2.  He used muscles he forgot he had and promptly fell asleep upon returning to his room.

October 9, 2013

Dave didn’t come home today as he hoped. The Drs want to take a few more tests just to be sure everything is good before they let him go.  Hopefully he can go home soon.

As a thank you to the wonderfull care givers at Duke, Linda and Dave provided lunch for everyone in the 2300 unit today.  Both day and night shifts enjoyed subs from Firehouse Subs. A company started by a couple of  Jacksonville Fl firemen.

October 7, 2013

Dave had a great day today in many ways.  He will come off of TPN tonight.  He walked 60 laps today, collected 14 sponsors so far for our 5k walk, that doesn’t even include those of you that I contacted last night.   And after one last biopsy tomorrow, they plan on releasing him on Wednesday.

We will need to take him back weekly for biopsys etc. to make sure he continues to show no sign of rejection.  Victorious Praise, here he comes!

Linda has several boxes ready to go to the hospital Wednesday.  It will take several trips just to get all his Lego models home.