Day +43
WBC 6.5
Before we get to Max, we have two important thank you's to go out: First to Margaret's sister Beth for hosting a Pampered Chef party in Max's name. The turnout was great and all who attended were so supportive of Max. Thank you to all who attended, and thank you Bethie for being such a good sister and a wonderful hostess! Meanwhile, across the country, today was the day of the Gorham, NH school cafeteria Ice Cream Sundae Party. It was a dollar per sundae and the event was a huge success. Thank you so much to everyone who worked on this for us. It means so much to know that Max has so many supporters around the country in his time of need.
As for the little guy, he made slight progress with his breathing today. Basically he was more consistent. He was able to handle the increased "deep suctions" of his nose and throat better today without desaturating much. He was also more awake today on less sedation, and I was able to hold him. He felt heavy even though he's looking a little skinny to us. He's getting a little stronger and he is once again using his videos for comfort. He has been manic for his oral medications, and hopefully that's a sign that he's ready to drink a bottle.
His stools had been starting to improve - less bloody and less watery. But tonight around midnight, I've seen a number of small diapers in a row with more bright red blood in them. It's still not the worst I've seen (it's close), but it seems like a step back from the progress of the last day or so.
Gracie is really enjoying having her transplant buddy Kendall back at the Ronald McDonald House. Grace visited her every time she came to visit Max, and she's happy to have her "home." Also, Max's British girlfriend Sophie found out today that she's 100% engrafted. She's a little cutie and she's been doing so well. Things haven't been as quick for our guy, but we're so happy for her because her family has been so nice and supportive of us. Please be sure to find her link on this site and say congratulations.
Thanks again for all the support. We really need it - especially lately!
--mike
Before we get to Max, we have two important thank you's to go out: First to Margaret's sister Beth for hosting a Pampered Chef party in Max's name. The turnout was great and all who attended were so supportive of Max. Thank you to all who attended, and thank you Bethie for being such a good sister and a wonderful hostess! Meanwhile, across the country, today was the day of the Gorham, NH school cafeteria Ice Cream Sundae Party. It was a dollar per sundae and the event was a huge success. Thank you so much to everyone who worked on this for us. It means so much to know that Max has so many supporters around the country in his time of need.
As for the little guy, he made slight progress with his breathing today. Basically he was more consistent. He was able to handle the increased "deep suctions" of his nose and throat better today without desaturating much. He was also more awake today on less sedation, and I was able to hold him. He felt heavy even though he's looking a little skinny to us. He's getting a little stronger and he is once again using his videos for comfort. He has been manic for his oral medications, and hopefully that's a sign that he's ready to drink a bottle.
His stools had been starting to improve - less bloody and less watery. But tonight around midnight, I've seen a number of small diapers in a row with more bright red blood in them. It's still not the worst I've seen (it's close), but it seems like a step back from the progress of the last day or so.
Gracie is really enjoying having her transplant buddy Kendall back at the Ronald McDonald House. Grace visited her every time she came to visit Max, and she's happy to have her "home." Also, Max's British girlfriend Sophie found out today that she's 100% engrafted. She's a little cutie and she's been doing so well. Things haven't been as quick for our guy, but we're so happy for her because her family has been so nice and supportive of us. Please be sure to find her link on this site and say congratulations.
Thanks again for all the support. We really need it - especially lately!
--mike
posted by Mike Ciacciarelli
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