Day +32
WBC 3.6
Happy Birthday Margaret!!!
The doctors just left and overall we were a little encouraged. They are looking at the reintubation as a bridge to get him over the troubles of GVH. So far his skin and liver have responded to the ATG and they expect his GI to follow.
What's most disappointing is that they put Max on a paralytic and he is totally immobile. They also put a peripheral IV on the top of his head because they needed one more place to get medicine. Now he can't wear his Superman hat. We've come to learn that Max's asthma is a little bit of a curveball for the doctors here. They've seen a lot of Hurler patients and all are unique, but Max's asthma seems to be more a problem than most. Ultimately we're back on the vent because his asthma was aggravated too much by either the GVH he's suffering from or from the medicine being used to treat it. Either way, rather than fight these battles simultaneously, they're fighting them sequentially and the GVH is being attacked first.
Also, today is Margaret's birthday. I'm not going to say how old she is, I'll just say that it rhymes with "dirty". She's a little down today (she had hoped Max would be extubated for her birthday, and he was . . . but . . .) and whether she likes it or not, we're going to do our best to give her the best birthday possible. With Max down and out, it's up to the rest of us to help her enjoy her day as much as possible. I couldn't ask for a better wife or friend, and to see her with Max is to see what love really is.
Thanks for all kind words and support, it's meant so much. It's nice to know that Max (and us!) have so many cheerleaders.
--mike
Happy Birthday Margaret!!!
The doctors just left and overall we were a little encouraged. They are looking at the reintubation as a bridge to get him over the troubles of GVH. So far his skin and liver have responded to the ATG and they expect his GI to follow.
What's most disappointing is that they put Max on a paralytic and he is totally immobile. They also put a peripheral IV on the top of his head because they needed one more place to get medicine. Now he can't wear his Superman hat. We've come to learn that Max's asthma is a little bit of a curveball for the doctors here. They've seen a lot of Hurler patients and all are unique, but Max's asthma seems to be more a problem than most. Ultimately we're back on the vent because his asthma was aggravated too much by either the GVH he's suffering from or from the medicine being used to treat it. Either way, rather than fight these battles simultaneously, they're fighting them sequentially and the GVH is being attacked first.
Also, today is Margaret's birthday. I'm not going to say how old she is, I'll just say that it rhymes with "dirty". She's a little down today (she had hoped Max would be extubated for her birthday, and he was . . . but . . .) and whether she likes it or not, we're going to do our best to give her the best birthday possible. With Max down and out, it's up to the rest of us to help her enjoy her day as much as possible. I couldn't ask for a better wife or friend, and to see her with Max is to see what love really is.
Thanks for all kind words and support, it's meant so much. It's nice to know that Max (and us!) have so many cheerleaders.
--mike
posted by Mike Ciacciarelli
0 Comments:
Post a Comment
<< Home