03 July 2007

update on Garty

This morning Garty and I headed to CHOP to find out what's going on with his kidneys. Dr. Tuchman (Does that ring a bell, Alanna?) was absolutely wonderful. He confirmed that Garty's kidney infections last fall were unrelated to his abnormal, cyst-filled kidneys. Unfortunately, Garty's kidneys aren't presenting exactly like a textbook case of anything. The doctor thinks there are 3 likely scenarios, the most likely being ADPKD. (If you want to know what that stands for, you'll have to look it up yourself. We haven't done any internet research yet.) It's probably going to be just a matter of waiting to see for certain if anything else develops that would indicate something different. As far as a prognosis, he gave me the short story which is 50% of people with ADPKD experience kidney failure and need a transplant by the age of 50. He said most often the transplants are in adulthood, but some children need them sooner. He's going to present Garty's case to the rest of the nephrology department on Friday to see if they have any other suggestions about what could be going on or any other tests they could run. He also sent us down the hall to have blood drawn to make sure Garty's kidney function is normal. If nothing new arises from his meeting or the bloodwork, we will wait to see him again in October. Between now and then, we will need to have Garty's urine tested if he runs any fevers that don't seem to have an obvious cause... a small annoyance since kids can get fevers easily, but it's just a precautionary measure to make sure nothing is wrong. ADPKD (and one of the other possible diagnoses) is hereditary, so we may also need to have Joshua and Patience checked once we have a firm diagnosis on Garty. The greatest part of the whole 2 hour visit was when Dr. Tuchman said, "If you go on the internet and look up ADPKD, which most people do, you'll read some really scary stuff. If that happens, just call me and we'll talk about it." And that sums up why he's our new favorite doctor.

So we're very concerned about this new development, but we're thankful it's not worse. In the realm of serious diseases, a 50-50 chance isn't too bad. We would appreciate your prayers for the doctors as they try to determine for sure what is going on, for us as we process the news, and for Garty's long term health.

1 comment:

Alanna Bryan said...

I do not recall Dr. Tuchman seeing Skylar. There was a team of 15 overseeing her treatment, and Dr. Kaplan was the primary one in charge. I don't recall how to spell his name now, but Dr. Sean Casadonti was the one who called and continually checked up on her and me. It is so nice that they really take the time to talk things thru thoroughly with you, answer all your questions, and are genuinely concerned for your child's welfare. I cannot say enough good things about our time there.

I did look up adpkd. I typed in "adpkd symptoms" and found some really good explanatory websites. It does seem to go either way, with no case being completely definitive. What was interesting was the diagram on the hereditary genes and children who get it.

I will pray for all things to be made clear for y'all, the doctors, and anyone else involved with Garty's care. I know God is good and has purpose in all things, so I will pray that your home be a place where "the peace that passes all understanding" resides in great measure both now and for the rest of your lives.
Much love,
Alanna