Transplant Work-up Journey

After a tour of the ICU where she will stay post transplant, the child life specialist gave Makelle a hospital buddy to  teach children about the procedures common during surgery. Makelle is already a pro when it comes to knowledge in this area, but it was fun to be able to give her buddy the IV injections instead of them being given to her!

  



After leaving the hospital Makelle's bilirubin levels (jaundice) continued to climb. This was taken when she was at about a 20 (normal is 0-1).



Makelle spent alot of time asleep due to more failing liver complications (ammonia intoxication and liver encephalopathy-you can read about how scary these are if you click on the tab under "complications" on the header of this blog).
The IV coming from her arm is being infused by the little "space ball" of medicine. It is like a deflating balloon that collapses, pushing the meds into her picc line. It makes it nice that the IV meds can be given at home instead of having to stay longer in the hospital. (This picture was actually taken in 2009 after another liver infection hospital stay, I posted this one because It looks so much like she did during this time).

This was such a difficult time. Words cannot express the pain and worry. Brandon and I started working out and eating very healthfully trying to cram instant perfect health into our out of shape bodies. We both were eligible to be considered as possible live donors. It is a risky, but amazing opportunity. They can now take part of a live donor liver and place it in the recipient. After time the liver regenerates into a full liver again. It is not the first choice for doctors as transplant options, but who wants to wait around waiting for someone to die and offer their organ so your child can live? Not to say that I am not 100% grateful for those who do such great acts of service by signing up to donate their organs... It's just that it is sad and painful all the way around.


Unfortunately, part way through the transplant work-up process,  we learned that our insurance would not pay to have the transplant at Primary Children's (where she has been followed and cared for her entire life). After a long battle and a slow down in the process we were finally approved for transplant 5 months after we first started the work-up process. (Fortunately our insurance changed at the beginning of the year to a plan that would cover Primary Children's).