Day +63
Happy Birthday Great Grandma Ciacciarelli. Number 85!
Today was a fairly quiet day. It was a pretty stressful night for Mike. Max's blood gases were being watched very carefully, and his carbon dioxide was creeping up a bit. He was working pretty hard to breathe, and the vent was parked outside Max's door. He fought it off, thank goodness. And his gases have been pretty good all day.
Max had another EEG this morning, and the seizures are still breaking through. The blood level of one of the anti-seizure meds was still lower then they wanted today so they are working to bring that up. They turned off his Ativan today in hopes of waking him. Mike was very worried this morning because Max was not responsive. He didn't even react one bit when his lungs were suctioned. After 5-6 hours without Ativan Max roused enough energy to squeeze my fingers a few times this afternoon. He also scratched his nose and managed to get his nasal cannula out of his nostrils. In addition to all of the medication making him sleepy, even a "small" seizure can make one very tired, and considering Max has been seizing for days it is no surprise he is so out of it.
The mystery of the day involves Max's blood sugar. It has been trending upwards for no apparent reason (in fact, it is surprising since his steroids have been lowered) so tonight he went on an insulin drip. His rash is looking worse and we don't know how his gut GVH is doing since the sedation has slowed everything down and he hasn't pooped since Tuesday.
Some of you may have already heard about a fund raiser being held for Max. It is a raffle which will be held on November 9th. We knew this was being planned, but had no idea how big it had become. So many awesome prizes have been donated including restaurant gift certificates, gift baskets, and even a 1 week stay in a condo in Hawaii! Many, many thanks to all involved especially to our neighbor Jodi who has led the effort. For more information please contact her at jodiheiss@hotmail.com.
We mentioned a while ago that Park Ridge Newcomers Club chose Max as the recipient of their annual Labor of Love Fund Raiser. It will be held on November 13th at the South Park Recreation Center in Park Ridge. Please contact my sister Beth at micucci4@comcast.net for more info. Thanks again to Mary Beth Micucci for nominating Max.
Please send some encouraging guest book entries to Max's Hurler friends Sophie and Anthony. Anthony was transplanted today and Sophie is not feeling well.
-Margaret
Today was a fairly quiet day. It was a pretty stressful night for Mike. Max's blood gases were being watched very carefully, and his carbon dioxide was creeping up a bit. He was working pretty hard to breathe, and the vent was parked outside Max's door. He fought it off, thank goodness. And his gases have been pretty good all day.
Max had another EEG this morning, and the seizures are still breaking through. The blood level of one of the anti-seizure meds was still lower then they wanted today so they are working to bring that up. They turned off his Ativan today in hopes of waking him. Mike was very worried this morning because Max was not responsive. He didn't even react one bit when his lungs were suctioned. After 5-6 hours without Ativan Max roused enough energy to squeeze my fingers a few times this afternoon. He also scratched his nose and managed to get his nasal cannula out of his nostrils. In addition to all of the medication making him sleepy, even a "small" seizure can make one very tired, and considering Max has been seizing for days it is no surprise he is so out of it.
The mystery of the day involves Max's blood sugar. It has been trending upwards for no apparent reason (in fact, it is surprising since his steroids have been lowered) so tonight he went on an insulin drip. His rash is looking worse and we don't know how his gut GVH is doing since the sedation has slowed everything down and he hasn't pooped since Tuesday.
Some of you may have already heard about a fund raiser being held for Max. It is a raffle which will be held on November 9th. We knew this was being planned, but had no idea how big it had become. So many awesome prizes have been donated including restaurant gift certificates, gift baskets, and even a 1 week stay in a condo in Hawaii! Many, many thanks to all involved especially to our neighbor Jodi who has led the effort. For more information please contact her at jodiheiss@hotmail.com.
We mentioned a while ago that Park Ridge Newcomers Club chose Max as the recipient of their annual Labor of Love Fund Raiser. It will be held on November 13th at the South Park Recreation Center in Park Ridge. Please contact my sister Beth at micucci4@comcast.net for more info. Thanks again to Mary Beth Micucci for nominating Max.
Please send some encouraging guest book entries to Max's Hurler friends Sophie and Anthony. Anthony was transplanted today and Sophie is not feeling well.
-Margaret
posted by Mike Ciacciarelli
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