Day +66
WBC 11.6
The weekend in review:
Our big worry is still the brain, and he's still not having continuous seizures, and that's the most important thing. While there is an occasional episode of shakiness, they don't seem to last long and seem to be triggered by some agitation and therefore may not be seizures per se. Hopefully these doses hold out and he won't need to step up to the next level of anti-seizure meds since they would suppress his breathing to the point of needing a ventilator again. Elsewhere, Max's skin rash has grown significantly worse in the last 3 days or so, while his diapers have remained the same. Another medicine for graft vs. host disease, called MMR, may be added soon to help. His lungs are holding up well, and he has not needed much help with the cannula. His x-rays are still not perfect and he still sounds "junky" but by Max standards, his lungs are really stable, and it's nice to talk about them last for once.
Goodbye to Grampa Chick, thanks for staying through this difficult time of seizures. And thanks for being a great car for Grace's gas pump game. Hello & Goodbye to Margaret's Auntie Eileen and her cousin Jenny. Thank you so much for coming up and playing with Grace. She really laughed a lot and had such a great time with you guys! "I can't pay the rent . . .You must pay the rent." Once again, someone from Margaret's childhood remarked how much Grace is just like her mother was at her age. What a joy to be given a glimpse into my wife's childhood - so full of life, creativity, and . . . manipulation!
Overall he's still so unbelievably tired. The anti-seizure meds do have a calming effect, of course, but they in and of themselves would not be slowing Max down this much. And he's on very little other medication. The best explanation is that Max is still wiped out from continuous seizures. Even one seizure can wipe a person out, so who knows when he will catch up. Rest is surely good, but we're going on almost 8 weeks since our boy has really opened his eyes. On the other hand, if he saw his skin, he might not like what he sees - raised red splotches all over his belly and back. It's disappointing to have his skin become such a problem because that had responded to gvh treatment long ago and had been doing well. They did take the EEG wires off his head today though, and it's nice to see his big bald bean again.
Halloween is coming soon and I'll be taking Grace to a local dry cleaner to haver her "Belle" costume hemmed and altered to fit. Fall in Minnesota is quite pretty, but we've been told that the campus here had some botanical engineers make sure that all the trees turn yellow and red because those are the school colors. So we've been kicking up lots of red and yellow leaves on our walks between the house and the hospital. Out the window we can see all the college kids going to and from a couple of big dorms. I'm sure I've passed some of the same kids any number of times. They're like every other anonymous college kid on every other campus, and like I was in Evanston not too long ago. But there the colors were purple and white and the botanical engineers were always at a loss, spending all spring and summer cross-pollinating and replanting only to bury their heads into the cold hard Autumn dirt and cry. As for the leaf controllers up here: Where I come from, that's called cheating.
Fighting Crime Before Bedtime,
--mike
The weekend in review:
Our big worry is still the brain, and he's still not having continuous seizures, and that's the most important thing. While there is an occasional episode of shakiness, they don't seem to last long and seem to be triggered by some agitation and therefore may not be seizures per se. Hopefully these doses hold out and he won't need to step up to the next level of anti-seizure meds since they would suppress his breathing to the point of needing a ventilator again. Elsewhere, Max's skin rash has grown significantly worse in the last 3 days or so, while his diapers have remained the same. Another medicine for graft vs. host disease, called MMR, may be added soon to help. His lungs are holding up well, and he has not needed much help with the cannula. His x-rays are still not perfect and he still sounds "junky" but by Max standards, his lungs are really stable, and it's nice to talk about them last for once.
Goodbye to Grampa Chick, thanks for staying through this difficult time of seizures. And thanks for being a great car for Grace's gas pump game. Hello & Goodbye to Margaret's Auntie Eileen and her cousin Jenny. Thank you so much for coming up and playing with Grace. She really laughed a lot and had such a great time with you guys! "I can't pay the rent . . .You must pay the rent." Once again, someone from Margaret's childhood remarked how much Grace is just like her mother was at her age. What a joy to be given a glimpse into my wife's childhood - so full of life, creativity, and . . . manipulation!
Overall he's still so unbelievably tired. The anti-seizure meds do have a calming effect, of course, but they in and of themselves would not be slowing Max down this much. And he's on very little other medication. The best explanation is that Max is still wiped out from continuous seizures. Even one seizure can wipe a person out, so who knows when he will catch up. Rest is surely good, but we're going on almost 8 weeks since our boy has really opened his eyes. On the other hand, if he saw his skin, he might not like what he sees - raised red splotches all over his belly and back. It's disappointing to have his skin become such a problem because that had responded to gvh treatment long ago and had been doing well. They did take the EEG wires off his head today though, and it's nice to see his big bald bean again.
Halloween is coming soon and I'll be taking Grace to a local dry cleaner to haver her "Belle" costume hemmed and altered to fit. Fall in Minnesota is quite pretty, but we've been told that the campus here had some botanical engineers make sure that all the trees turn yellow and red because those are the school colors. So we've been kicking up lots of red and yellow leaves on our walks between the house and the hospital. Out the window we can see all the college kids going to and from a couple of big dorms. I'm sure I've passed some of the same kids any number of times. They're like every other anonymous college kid on every other campus, and like I was in Evanston not too long ago. But there the colors were purple and white and the botanical engineers were always at a loss, spending all spring and summer cross-pollinating and replanting only to bury their heads into the cold hard Autumn dirt and cry. As for the leaf controllers up here: Where I come from, that's called cheating.
Fighting Crime Before Bedtime,
--mike
posted by Mike Ciacciarelli
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