Hello all, this is Stacy. Julian has a busy week ahead. First of all, yesterday I received a call from his kidney nurse at the Children's Hospital, it looks like they want us in asap to talk about dialysis again. Seems that because Dave is not a match they are thinking Julian will be on the transplant list the better part of a year (or longer) and so they'd like to start him on Dialysis. We have more questions, and we can ask the Doctor when we go in a week from Thursday. Julian has been stable with his kidney function for about a year now, fluctuating from 14% down to 12.5%, where he is right now. But all of his other numbers look good (besides creatinine and BUN), and he is responding to the Epogen shots which is an anti-anemia drug that increased red blood cell production. So I guess I'm not understanding why we can't wait a few more months and give the transplant list a chance!
Dave and I agree that if Julian would be better off on Dialysis, ie his lifespan would be extended if he were on dialysis for the next few months to a year, as opposed to not being on Dialysis, we are all for it. That is the question I have for the doc on Thursday. We want to do what is best for Julian, that is for sure. If we can spare him invasive surgery and dialysis every night we would like to do that, so long as his kidneys hold up like they are. Currently we have one more potential donor (you know who you are! Thanks!) going through the process of being tested. If he is not a match, then we will have to wait for a "cadaveric kidney" which could take up to a year or longer to come through.
Yes! So pray that the donor is a match! Thank you!
Now, on to the busy week. Firstly, he has 4 vaccinations tomorrow. He's up to date, but because of his impaired kidney function a couple of the previous vaccines need to be repeated. They test his blood to see what antibodies he has developed, and he's got the mumps antibody but not rubella. So, he gets an MMR tomorrow, as well as a Hepatitis B, a Hepatitis A, a Pneumovax, and a TB test. I'll also take his Epogen shot up there so we don't have to give it to him this week. (Poor guy!) Then on Friday we go up for a psychological evaluation (all of us) which is included in the Transplant evaluation. Then on Monday Julian has mouth surgery at Children's to fill 3 cavities. They'll also take X-rays to see if there are any other cavities not seen in the visual exam that they can fill then as well. This is all in preparation to be put on the list. While Julian is in surgery, I will be attending a socialogical evaluation at the hospital. Once the vaccines, surgery, and evaluations are complete, Julian will be placed on the National Organ Recipient List.
After that happens, we wait. How long we wait is up to the Lord. Could be the next day, although they tell us that is highly unlikely. But God knows. If He wants to give Julian a kidney the next day, he can do it! It won't make sense, it will be a miracle, but He can do it.
So thank you for praying.