And so, finally, and update! Life feels like it is going a million miles an hour and yet standing still...a strange juxtaposition for sure. At any rate, here is what is new, not necessarily in chronological order:
*August 4th found us again at the UofW, this time just Mommy and Daddy as Ms. E was having too much fun with her auntie and cousins to come along. We went through the transplant class, which is about 4 hours during which we had the opportunity to hear from a REAL, LIVE liver transplant recipient. And that was VERY cool. Colin received his transplant in 2002, and in 2004 his fiancee also had one, so he has seen both sides of the coin. Awesome. Truly. To hear the straight dope from one who has lived it gave us both much hope for what life will hold. It was hard to believe that this pretty healthy looking/talking/acting guy had once been so sick he was nearly on death's door. He was taking a ton of Lactulose (apparently a pretty foul cocktail similar to GoLightly, for any who have had to take that) to counteract the high ammonia levels in his body. Basically, it causes profuse diarrhea that doesn't allow you to absorb the ammonia that your liver is not dealing with. If ammonia gets too high, you can get hepatic encephalopathy, a kind of swelling of the brain that leads to severe confusion, seizures, etc. NOT GOOD. Fortunately, with some good drugs they can counteract it (pretty well) and keep you functioning until your new liver arrives.
We then heard from the transplant nurse coordinator, a lady named Stephanie who I would not want to mess with because you can tell she is a bulldozer when it comes to getting her job done and patients taken care of (can I get an AMEN! thanks be to God for the motivated, driven people in health care that we have been given!). And finally, the pharmacist who had a lot of good info about the drugs you take the first three months after transplant (40/day) and the rest of your life (12/day). We then saw a nutritionist who unfortunately gave Alex license to drink as much whole milk as he wants to keep his calories up and a very nice social worker who will be helping us with some of the logistics of the transplant, but since Alex is not getting it due to drug/alcohol reasons, maybe not as much as some. Also, she coordinates the support group that we are hoping to attend when we go back October 4.
We had some good mommy/daddy time, some great Indian food, and some amazing Seattle weather.
And now, Alex is actually feeling---wait for it---better! He is not quite the shade of yellow he once was and isn't quite so exhausted. We know that this can flip on a dime, so keeping that in mind, it's nice. They haven't required 30 day blood draws yet, so that tells me that his MELD is still below 19. We will go back on the 4th of October and meet with the transplant surgeon, do some other tests, ect, because we are CANDIDATES FOR TRANSPLANT. BOOYAH! This is great because it means that no red flags come up in the preliminaries that disqualify us. YES. Big, BIG sigh of relief.
Soooo, to recap:
Going back on Oct. 4, 2011, for more mtgs, tests.
Being considered for "THE LIST"
Alex is doing better, but could easily shoot up to a MELD of 30 and then life would not be so fun.
Miss E is almost 3!!! We will sending out some kind of invite/evite for her b-day in the near future....please stay posted.
Keep those prayers coming and thanks for those you have already prayed! God Bless :)
