Day +36
WBC 2.2
Hey Max Fans!
Friday was mostly a day of small progress on the vent. Sometime during Thursday night Max's saturations began to improve and they were able to finally turn the knobs down a little more aggressively and the talk of extubation became a little more serious. So now it seems sooner rather than later again, but no real timetable yet.
Other issues: GVH of skin looks amazingly better, GVH of liver has improved again, but it's really hard to tell if the gastrointestinal GVH has been responding. He is still very uncomfortable when he stools and when he does, it is quite bloody. In addition he's had some blood in his OG tube (tube up from his stomach) and in his ET tube (breathing tube) so they are going to continue to watch all of this. There could be many reasons for this, but they are hoping for a more obvious explanation (continued effects of GVHD) rather than a rarer one (internal bleeding, ulcer, etc.) As Uncle Marko would say, expect the horse, not the zebra.
Elsewhere in the extended world of Max, the Generosity Express (choo! choo!) has apparently picked up steam. The good people of the school district of Gorham, NH - high school teachers, elementary school teachers, superintendent, and others - collected money together for Max and presented it to my parents today. First they were incredibly touched by the gesture, then they were truly blown away by the generosity. When I talked to them today, they were so moved and so happy to be able to stretch this aid across the country to us. Many of these people have become Max fans because of their relationship to my parents and many even still remember me as a student (be nice to your teachers!) but many of these people are not close to any of us but have been touched by Max's story. To all of you: THANK YOU SO MUCH!
The night before, we found out that a women's group in Park Ridge (IL) has chosen Max for an annual fundraiser. Mary Beth Micucci submitted Max's name. I don't have all the details here at the hospital, but again, THANK YOU so much for doing this, we had no idea Max would be able to be a recipient for this kind of help. I'm sure Margaret can explain more in tomorrow's update.
We have received support in so many different ways, both big and small. But there are still many of you who feel like you are not doing enough. Believe us when we tell you that we appreciate even the smallest gestures. Lately we've seen improvement in Max and we know he couldn't have done it without your prayers and kind words. As for us, we've received so many little care packages (especially so many sweet treats) that we really feel so much love and care around us. It's odd to say this under the circumstances, but even now we feel very lucky.
We are blessed,
--mike
Hey Max Fans!
Friday was mostly a day of small progress on the vent. Sometime during Thursday night Max's saturations began to improve and they were able to finally turn the knobs down a little more aggressively and the talk of extubation became a little more serious. So now it seems sooner rather than later again, but no real timetable yet.
Other issues: GVH of skin looks amazingly better, GVH of liver has improved again, but it's really hard to tell if the gastrointestinal GVH has been responding. He is still very uncomfortable when he stools and when he does, it is quite bloody. In addition he's had some blood in his OG tube (tube up from his stomach) and in his ET tube (breathing tube) so they are going to continue to watch all of this. There could be many reasons for this, but they are hoping for a more obvious explanation (continued effects of GVHD) rather than a rarer one (internal bleeding, ulcer, etc.) As Uncle Marko would say, expect the horse, not the zebra.
Elsewhere in the extended world of Max, the Generosity Express (choo! choo!) has apparently picked up steam. The good people of the school district of Gorham, NH - high school teachers, elementary school teachers, superintendent, and others - collected money together for Max and presented it to my parents today. First they were incredibly touched by the gesture, then they were truly blown away by the generosity. When I talked to them today, they were so moved and so happy to be able to stretch this aid across the country to us. Many of these people have become Max fans because of their relationship to my parents and many even still remember me as a student (be nice to your teachers!) but many of these people are not close to any of us but have been touched by Max's story. To all of you: THANK YOU SO MUCH!
The night before, we found out that a women's group in Park Ridge (IL) has chosen Max for an annual fundraiser. Mary Beth Micucci submitted Max's name. I don't have all the details here at the hospital, but again, THANK YOU so much for doing this, we had no idea Max would be able to be a recipient for this kind of help. I'm sure Margaret can explain more in tomorrow's update.
We have received support in so many different ways, both big and small. But there are still many of you who feel like you are not doing enough. Believe us when we tell you that we appreciate even the smallest gestures. Lately we've seen improvement in Max and we know he couldn't have done it without your prayers and kind words. As for us, we've received so many little care packages (especially so many sweet treats) that we really feel so much love and care around us. It's odd to say this under the circumstances, but even now we feel very lucky.
We are blessed,
--mike
posted by Mike Ciacciarelli
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