Day +37
WBC 2.2
Same old, same old. Again, that's a good thing. Max continued his progress on the vent and has neared a point where extubation is possible. We have been through this before, so it's like Yogi Berra says - deja vu all over again. In fact, even when he was first born it was the second time they took him off the vent that he was really able to do well on his own. Let's hope history repeats itself. That said, Max may not come off today so we'll keep our fingers crossed. In graft vs. host news, Dr. Billy Rubin says his liver is doing well, but otherwise we're not so sure. Max's skin improved so much, but now we're thinking it looks red again. And while he seems more comfortable overall, he is still making a lot of stools that are bloody red-brown and aren't too fun to look at.
Otherwise, it's been nice having Granny for such a long time (and what a gift to her if she's here to see Max get off the vent!) and yesterday Auntie Beth, Uncle Vince, and cousin Vinny drove north to be with us as well. Grace really got a kick out of her cousin who is talking so much and had a blast motoring around the play rooms at Ronald Mcdonald. What are we going to do after Sunday? It will be the last day we have family help here for a while and we're going to miss it. We know families out here are getting by without any help or spouses are getting by without each other, and we are so grateful for all of the sacrifices people are making to provide us with such great care. Thank you.
Thanks also to our friends overseas, Padraic & Tina, for finding a home for our updates until our webmistress Chris returns from the aftermath of Hurricane Isabel. Don't forget to check on their little Sophie often. She's Max's future European girlfriend I think. Tell her to eat lots of Wotsits!
Please continue to pray for Max and for all the kids here at the hospital and for all the kids fighting for their lives. It really makes a huge difference.
All the best,
--mike
Same old, same old. Again, that's a good thing. Max continued his progress on the vent and has neared a point where extubation is possible. We have been through this before, so it's like Yogi Berra says - deja vu all over again. In fact, even when he was first born it was the second time they took him off the vent that he was really able to do well on his own. Let's hope history repeats itself. That said, Max may not come off today so we'll keep our fingers crossed. In graft vs. host news, Dr. Billy Rubin says his liver is doing well, but otherwise we're not so sure. Max's skin improved so much, but now we're thinking it looks red again. And while he seems more comfortable overall, he is still making a lot of stools that are bloody red-brown and aren't too fun to look at.
Otherwise, it's been nice having Granny for such a long time (and what a gift to her if she's here to see Max get off the vent!) and yesterday Auntie Beth, Uncle Vince, and cousin Vinny drove north to be with us as well. Grace really got a kick out of her cousin who is talking so much and had a blast motoring around the play rooms at Ronald Mcdonald. What are we going to do after Sunday? It will be the last day we have family help here for a while and we're going to miss it. We know families out here are getting by without any help or spouses are getting by without each other, and we are so grateful for all of the sacrifices people are making to provide us with such great care. Thank you.
Thanks also to our friends overseas, Padraic & Tina, for finding a home for our updates until our webmistress Chris returns from the aftermath of Hurricane Isabel. Don't forget to check on their little Sophie often. She's Max's future European girlfriend I think. Tell her to eat lots of Wotsits!
Please continue to pray for Max and for all the kids here at the hospital and for all the kids fighting for their lives. It really makes a huge difference.
All the best,
--mike
posted by Mike Ciacciarelli
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