Day +34
WBC 1.6
It's been kind of a slow day so I thought I'd write the update a little early. Also, we've seen just about all the doctors we're going to see, so I've got all the news that's fit to print.
Max is finished with this round of ATG. This rabbit ATG will still be hopping around in his system for a couple more weeks, but the six-hour infusions are done. Hopefully this medicine in him is less reactive overall and if Max can move again towards extubation it will not have an effect. As for extubation itself, that seems a ways away. His lungs continue to have pockets of collapse and he's not totally opened up yet. Today they're going to start something called "Muco-mist" which is some sort of nebulized treatment that helps open up the lungs. Apparently it smells like rotten eggs so that's something to look forward to.
The doctors have done much to calm our nerves in the last couple of days. We've been told (in the face of much incredulity) that there is nothing extraordinarily frightening about Max's condition. When I brought up the fact that it might be because they've seen hundreds of transplant kids and scores of Hurler kids, the doctor told me again that there is nothing that's making his heart race. I said, well, everything is making my heart race and he said, of course, if it was his kid he'd be doing the same thing.
That said, Max needs to make a lot of progress. He needs to beat GVHD (so far he is starting to respond to the ATG). He needs to get his lungs clear and be extubated. He needs to grow cells (he's going back on the growth factor for a day to help the neutrophils grow). That's a lot of stuff! But hopefully Max will just continue to mosey along down the path to better health one day at a time.
One important thing I didn't really make clear a few days ago: as scared as we were and as hard as it was to watch Max's chest work so hard . . . he never gave up. He was keeping his saturations in the low 90s even though he had to be so uncomfortable. What an inspiration! We wish we had his strength.
Thanks for all the support and birthday wishes,
--mike
It's been kind of a slow day so I thought I'd write the update a little early. Also, we've seen just about all the doctors we're going to see, so I've got all the news that's fit to print.
Max is finished with this round of ATG. This rabbit ATG will still be hopping around in his system for a couple more weeks, but the six-hour infusions are done. Hopefully this medicine in him is less reactive overall and if Max can move again towards extubation it will not have an effect. As for extubation itself, that seems a ways away. His lungs continue to have pockets of collapse and he's not totally opened up yet. Today they're going to start something called "Muco-mist" which is some sort of nebulized treatment that helps open up the lungs. Apparently it smells like rotten eggs so that's something to look forward to.
The doctors have done much to calm our nerves in the last couple of days. We've been told (in the face of much incredulity) that there is nothing extraordinarily frightening about Max's condition. When I brought up the fact that it might be because they've seen hundreds of transplant kids and scores of Hurler kids, the doctor told me again that there is nothing that's making his heart race. I said, well, everything is making my heart race and he said, of course, if it was his kid he'd be doing the same thing.
That said, Max needs to make a lot of progress. He needs to beat GVHD (so far he is starting to respond to the ATG). He needs to get his lungs clear and be extubated. He needs to grow cells (he's going back on the growth factor for a day to help the neutrophils grow). That's a lot of stuff! But hopefully Max will just continue to mosey along down the path to better health one day at a time.
One important thing I didn't really make clear a few days ago: as scared as we were and as hard as it was to watch Max's chest work so hard . . . he never gave up. He was keeping his saturations in the low 90s even though he had to be so uncomfortable. What an inspiration! We wish we had his strength.
Thanks for all the support and birthday wishes,
--mike
posted by Mike Ciacciarelli
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