Day +29
WBC 2.5
All in all, things are continuing to go well. He's even been growing his white count a little bit in the last couple of days without needing the growth factor. He's almost 40 days out from Day Zero and the time has flown by. While some kids are lucky to be out of the hospital by this point, we're still encouraged by Max's progress - and by the support we've received from all of you. Please go back and read the last couple of updates since they include some important thank you's and some information about some outstanding generosity we've received lately.
Also today we saw Anthony, another little dude with Hurler who's from Illinois. He's a twin, but his sister doesn't have the disease. He'll be starting everything very soon so please add him to your kind thoughts and prayers.
Here's the latest on Max: Sunday was fairly uneventful. Max has continued his progress on the vent and is ready to be extubated. But it is on hold because of his gastrointestinal issues. He has continued to have bloody stools and it appears that one of two things is happening: 1. His GVHD of his guts is not responding enough to the ATG and steroids he is on and he will need the next level of treatment. 2. The bleeding has some other explanation.
So the plan is to do a "flex scope" today of his lower GI system from below. They did this before to confirm that he had GVHD. If they see some residual bleeding from his previous biopsy, they can cauterize it at this time. Also they will be doing a new biopsy and results will confirm or deny GVHD by tomorrow mid-day. Because this is a scope, they also can look around and can compare the general health of the region to what was seen before.
If it comes back negative, they will do a CT scan. This will involve transporting Max while he is on a vent. They unplug the vent and have to "bag him" through the whole procedure. The CT Scan can only show the location of bleeding, but can't necessarily explain the cause.
So more mysteries to be solved. Where is Angela Lansbury to solve this one? Wouldn't it be great if she could just ride in on that bike with the basket on the front and have all the answers? What am I talking about?
--mike
All in all, things are continuing to go well. He's even been growing his white count a little bit in the last couple of days without needing the growth factor. He's almost 40 days out from Day Zero and the time has flown by. While some kids are lucky to be out of the hospital by this point, we're still encouraged by Max's progress - and by the support we've received from all of you. Please go back and read the last couple of updates since they include some important thank you's and some information about some outstanding generosity we've received lately.
Also today we saw Anthony, another little dude with Hurler who's from Illinois. He's a twin, but his sister doesn't have the disease. He'll be starting everything very soon so please add him to your kind thoughts and prayers.
Here's the latest on Max: Sunday was fairly uneventful. Max has continued his progress on the vent and is ready to be extubated. But it is on hold because of his gastrointestinal issues. He has continued to have bloody stools and it appears that one of two things is happening: 1. His GVHD of his guts is not responding enough to the ATG and steroids he is on and he will need the next level of treatment. 2. The bleeding has some other explanation.
So the plan is to do a "flex scope" today of his lower GI system from below. They did this before to confirm that he had GVHD. If they see some residual bleeding from his previous biopsy, they can cauterize it at this time. Also they will be doing a new biopsy and results will confirm or deny GVHD by tomorrow mid-day. Because this is a scope, they also can look around and can compare the general health of the region to what was seen before.
If it comes back negative, they will do a CT scan. This will involve transporting Max while he is on a vent. They unplug the vent and have to "bag him" through the whole procedure. The CT Scan can only show the location of bleeding, but can't necessarily explain the cause.
So more mysteries to be solved. Where is Angela Lansbury to solve this one? Wouldn't it be great if she could just ride in on that bike with the basket on the front and have all the answers? What am I talking about?
--mike
posted by Mike Ciacciarelli
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