Day +49
WBC 4.4
We didn't have our care conference today (it will be tomorrow) so it's hard to give an overall picture of Max's health just yet. Suffice to say, we're well past the time of discharge for a "best-case-scenario" but our champ is still holding his own. And he's still facing the same two main issues: gastrointestinal GVHD and unstable breathing/lungs.
On the gut front, he had another flex sigmoid ("butt scope") done today and more biopsies were taken from his intestinal tract. The GI doc felt pretty certain that he was still battling GVH. We thought the return to straight blood coming out of his butt was pretty conclusive ourselves, but tomorrow will once again bring official word. But on the basis of visual evidence the BMT doc has decided to put Max's steroids up to a very high level to try and teach these graft cells a lesson or two. This will result in a VERY agitated kid, so it will again be difficult for Max to come around to his old self. The first time they changed his steroid dose it seemed to give us a glimmer of hope (we actually saw brown again!) so hopefully this change will finish the job.
As for lungs, no changes today. The four-hour constant albuterol nebulizer treatment is now entering it's third day so I guess that qualifies as regressing a bit. They just don't seem to have the best control of his breathing yet. I've said it before and I'll say it again, there is nothing harder than watching your child struggle to breathe. So far they are doing all they can to keep his lungs open and to get his secretions out. He's made it 9 days off the vent so far, with hopefully many more to come. The changes in the treatment for GVHD always seem to come around and give his breathing a little kick in the teeth so we'll see what happens.
Again I make this appeal: Who sent the fruit basket that we got today? Identify yourself so we can thank you proper! Also, we received an amazing stack of books from the New Jersey Ciacciarelli's and two great bears from one of Max's NICU nurses. Once again, we are running out of words to use to describe the gratitude we feel for the generosity we never could have expected.
Finally, please go international with your support of Max's Belgian girlfriend, Yasmine, who has just caught a nasty virus called CMV. Her link is in the "Friends with Hurler" section. It is so amazing to see what happens when Max's little army of supporters is dispatched around the globe. You guys are awesome!
That's about it, I think we'll be able to give a fuller picture tomorrow of Max's progress and his future. Let's hope that this meeting is positive, we could really use some encouragement from the docs. Not false hope, encouragement.
Always trying to keep it short, never succeeding . . .
--mike
We didn't have our care conference today (it will be tomorrow) so it's hard to give an overall picture of Max's health just yet. Suffice to say, we're well past the time of discharge for a "best-case-scenario" but our champ is still holding his own. And he's still facing the same two main issues: gastrointestinal GVHD and unstable breathing/lungs.
On the gut front, he had another flex sigmoid ("butt scope") done today and more biopsies were taken from his intestinal tract. The GI doc felt pretty certain that he was still battling GVH. We thought the return to straight blood coming out of his butt was pretty conclusive ourselves, but tomorrow will once again bring official word. But on the basis of visual evidence the BMT doc has decided to put Max's steroids up to a very high level to try and teach these graft cells a lesson or two. This will result in a VERY agitated kid, so it will again be difficult for Max to come around to his old self. The first time they changed his steroid dose it seemed to give us a glimmer of hope (we actually saw brown again!) so hopefully this change will finish the job.
As for lungs, no changes today. The four-hour constant albuterol nebulizer treatment is now entering it's third day so I guess that qualifies as regressing a bit. They just don't seem to have the best control of his breathing yet. I've said it before and I'll say it again, there is nothing harder than watching your child struggle to breathe. So far they are doing all they can to keep his lungs open and to get his secretions out. He's made it 9 days off the vent so far, with hopefully many more to come. The changes in the treatment for GVHD always seem to come around and give his breathing a little kick in the teeth so we'll see what happens.
Again I make this appeal: Who sent the fruit basket that we got today? Identify yourself so we can thank you proper! Also, we received an amazing stack of books from the New Jersey Ciacciarelli's and two great bears from one of Max's NICU nurses. Once again, we are running out of words to use to describe the gratitude we feel for the generosity we never could have expected.
Finally, please go international with your support of Max's Belgian girlfriend, Yasmine, who has just caught a nasty virus called CMV. Her link is in the "Friends with Hurler" section. It is so amazing to see what happens when Max's little army of supporters is dispatched around the globe. You guys are awesome!
That's about it, I think we'll be able to give a fuller picture tomorrow of Max's progress and his future. Let's hope that this meeting is positive, we could really use some encouragement from the docs. Not false hope, encouragement.
Always trying to keep it short, never succeeding . . .
--mike
posted by Mike Ciacciarelli
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