Yesterday we had Gavin's August check-up at UCLA. We did have plane tickets reserved in advance and were planning on flying out there in the morning, and then back home in the evening after his appointment...BUT we used our flight credits to fly out for the "dry run" a couple weeks ago. Not so smart, but oh well. It would have been $600.00 to re-buy our tickets at such late notice, so needless to say, we drove.
It was not such a pleasant day, waking at 5am, driving to LA for 7 hours, getting to his appointment at 1pm 15 minutes late (traffic! ugh!), grabbing lunch real quick, then getting right back in the car and driving 9 hours back home (I have no idea), and walking through the door at 1am.
Gavin's appointment went really well though. Overall, he's looking okay. He is still active and has happy moments during the day, even if he does sleep more and is a bit more cranky. His doctor said she'd be more concerned if he were laying there like a wet rag (so not Gavin! He's still active as ever!). Gavin's labs came back really bad though.
His bilirubin is higher at 38. His fibrinogen is really low at 69. His glucose was super low. His INR was okay, but not good. His platelets were low. Although his protein levels were up (a good thing!) and his albumin is still normal as usual (however, its more of a "false lab" because he gets it artificially in his TPN at night).
The GOOD NEWS about all that, is that even though his labs are showing really bad, Gavin is not really showcasing any of the symptoms that usually go along with them (really bad bleeds, etc). So the result is that he got a new HIGH SCORE of 32 (which is the highest its ever been!) without being really sick. ::KNOCK ON WOOD::
His team said to "stay on our toes" because with a score that high its bound to be soon. His transplant cooridinator doesn't even think we'll make to our follow-up appointment with Gavin's GI next week. As for me, ya ya...we've heard that story before! I'll believe it when I see it! ;) Until then, its life as usual. However, we are repacking our transplant bags and keeping our cell phones extra close...
He gets re-scored on Monday though...Labor Day, which is a little disappointing because holidays are usually "higher traffic" times in terms of organ donation. Its not a nice thought, but its the truth. :/ (drive safely, everyone!!!) I hope his score stays high, although either way, it won't go down too much and he's the only O blood baby at UCLA right now anyway (actually I think they just got a new one, but her score is only 11 right now). So pretty much Gavin is at the top of the list for his age group.
His doctor also increased his number of check-ups, so now instead of going out once a month, we'll be going out again in 3 weeks! We're going to have tighten our belts a bit, making TWO trips out a month now...but hopefully we'll just get the call before then. So anyway, keep Gavin in your prayers this weekend! He just may need it!
{ This is my family }
Wednesday, August 27, 2008
New high score!
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I just found this website and read these posts. I'm so sorry that your son has this disease. My father was diagnosed with it 6 years ago. 5 years ago he was lucky enough to get a liver transplant. Unfortunately he began to experience rejection, which turned into chronic rejection. He was put through all the tests again to be put back on the list. His score was also very high. We had a false run and thought that it would be months until we got another call. Because his score was so high the doctors did everything they could to be sure he would be able to get the liver as soon as possible. Two days after the false alarm we got the call, and sure enough he got his second liver transplant. It has been about two months and he is doing great. I know the doctors will do everything they can to help your son. The only thing that got my father this far was trying to keep his spirits as high as he could and keep reminding himself that everything will be okay. It helped him through some rough times in the rejection period. Keep your spirits high and I'm sure the doctors will take care of your son. Good luck and God bless.
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