July 2 – Dave had his last appt with Dr Sudan before going home. She got called in to do a pediatric kidney transplant. Disappointing but we understood. That said, we did meet with the rest of his team. His most recent labs continue to look good but will continue to have labs run bi-weekly at home. He will continue to maintain a daily log of all vitals which includes his weight, blood pressure and temperature. Any significant change in vitals warrants a call to the team coordinator at Duke. We are told he will need to come back to see Dr Sudan in the long term annually for rest of his life. HOWEVER, in the short term, maybe 2 years, every 6-8 weeks. What? Huge surprise, we were not expecting that. We thought Dave was being turned over to Mayo Clinic for ongoing care. Instead they will be working in tandem with them. Duke will get copies of everything. If he runs into trouble he will go to them and they will call Duke. A call is being set up with Dr Sudan for Monday so she can explain all this better.
July 7 – Our packing is almost done! Steve and Riley will arrive tomorrow. Gary arrives on Thursday. I’ll hand in apartment keys on Friday and the truck pulls out with Gary and Steve behind the wheel. WE will arrive home Saturday around noon. We are in good spirits. Mackenzie is excited because she can now count the days until daddy is home with her fingers on one hand.
11:00 a.m.- Conference call with Dr Sudan to answer all our questions and get him released to Mayo Clinics care. She wants him back here in 1 month! You have got to be kidding. And probably every month for the next 6-12 months. This is our first time hearing this. We had long conversations about the why’s. I asked about risks and longevity. We discussed national statistic outcomes of small intestine transplants in adults vs Dr Sudan’s personal statistcs (she has 100% survival rate at both 1 year and 5 year marks). National statistics are 70% 1st year and 50%, of the 70 %, at 5 year mark). Bottom line, her detailed attention to her patients is why they are all still alive. Dave will be back as often as she requires. We did sort of agree to a compromise. She suggested she might be comfortable with Dr Lewis, Chief of GI or Dr Ngyuen, chief liver transplant surgeon at Mayo doing an assessment every other month and getting on a conference call.
In the meantime, we will be back in Durham some time in August. As for transferring his care over to Mayo? Never 100%. The small intestine is very quick to become compromised if and when a patient picks up other illnesses. Unless a hospital has a small bowel specialist, which Mayo does not, and most do not, Duke will remain his primary care facility. Mayo, though, will play the critical role of doing immediate assessments, administer protocols as directed by Duke or arrange for transfer to Duke if it becomes necessary.
I asked her thoughts regarding the fact that Dave is immunosuppressed and Kenzie goes to daycare and will be starting preschool. Constant washing hands, both David and Kenzie. In those months when influenza are most prevalent if her school is reporting high illness or absence rates she should be kept home to minimize her picking it up and bringing it home. I guess we know when I might be babysitting this winter.
This past Saturday we said goodbye to special friend, Nila Nagey, we found here in Durham. The 3 of us went to see Jersey Boys and had a great dinner afterwards. Looks like it may not be goodbye after all!
While things thankfully are winding down here in Durham, NC, we will continue to post updates as events occur. The move will be a big event so expect to see pictures of leaving and homecoming. From then on I will be posting status of check ups on monthly or bi monthly basis at Duke as they occur. Hopefully I will not have a need to post news of any interim complications.
Also, Dave’s Aunt Kathy’s first goal, now that she is able to sit at a computer again, is to complete the cookbook she and Chantel started. All the proceeds will go to help with Dave’s on going medical needs. His prescription costs alone will be huge.
Thank you to all those that have already sent recipes. Anyone who would still like to submit recipes, please send them to firstname.lastname@example.org. She needs more Appetizers, Drinks, Gravy and Sauces or Side Dishes. Although any will be appreciated. Kathy is looking for any homemade recipies as apposed to ones out of other cookbooks. Your favorite dish your mom or grandma made.
When it is completed, Kathy will post the information here for ordering your copies.
As always, thanks for caring.
Dave and Linda
Dave email@example.com (904)327-1492
Linda firstname.lastname@example.org (904)610-7352