Day +16
WBC 2.8
Look at that WBC! That's the best news of the day. The rest of the report, however, is not as good. They still haven't identified what is making Max feel so yucky. Overall, he's lost about a kilo (2.2 lbs.) has almost no energy, and is pooping constantly. The vomiting has slowed down (only two times today) but still contains blood flecks and we've seen them in his stool as well.
The best explanations for this are: 1. Gastrointestinal graft vs. host disease. 2. Late reaction to chemo 3. A virus.
The first option is possible considering Max seems to be engrafting. But GVH in the gastrointestinal area can be difficult to identify and treat so we are hoping this is not the case.
Most of the nurses around here find the idea of a sudden reaction to chemo to be a little unlikely.
Some sort of virus in the gut is the best explanation but he has tested negative for most of the obvious ones. His stool has been sent off for cultures two different times today.
While he showed some energy overnight and in the morning, he has been lethargic or asleep all day. Maybe his days and nights are mixed up and he will have me up all night, but if so, I'll just be glad to see my guy with a little energy. They've decided to switch some of his maintenance fluids to have less potassium and glucose and they've decided to hook him up to oxygen saturation and heart rate monitors all night.
Max looks and feels really sick. The nurses who have had Max many times have never seen him this bad. He has virtually no personality and does not seem comfortable. He's on morphine to try to offer some comfort but that makes him sleepy too.
Please continue to root for Max to fight off this virus or whatever he's got and to get back to his old self. Special thanks to Margaret for staying up all night with him and for taking such good care during the wee hours. Thanks to Grace for napping today and for giving Mom a break.
Go Max! Grow Cells Grow!
Mike
Addendum as of Sunday, 8/31 at 7:14 A.M.
Dear Max's holiday weekend fans,
This morning I was told that Max's counts are 0.5. Yikes. As quickly and as sharply as they rose, they have fallen back down. He is also running a fever and he's on Tylenol. Today will probably lead to more questions than answers. Max has not been himself for 3 days now. Not at any point last night did he have any real "awake" periods. He's sleeping most of the time, and when he wakes he just grabs his ankles and poops. He's best described as a shell of himself. This is not the way we want to see our son. He's really sick and trying to fight off something. Any advice from the Hurler community would be welcome at this time.
More scared than ever (but not wanting to be scary),
Mike
Look at that WBC! That's the best news of the day. The rest of the report, however, is not as good. They still haven't identified what is making Max feel so yucky. Overall, he's lost about a kilo (2.2 lbs.) has almost no energy, and is pooping constantly. The vomiting has slowed down (only two times today) but still contains blood flecks and we've seen them in his stool as well.
The best explanations for this are: 1. Gastrointestinal graft vs. host disease. 2. Late reaction to chemo 3. A virus.
The first option is possible considering Max seems to be engrafting. But GVH in the gastrointestinal area can be difficult to identify and treat so we are hoping this is not the case.
Most of the nurses around here find the idea of a sudden reaction to chemo to be a little unlikely.
Some sort of virus in the gut is the best explanation but he has tested negative for most of the obvious ones. His stool has been sent off for cultures two different times today.
While he showed some energy overnight and in the morning, he has been lethargic or asleep all day. Maybe his days and nights are mixed up and he will have me up all night, but if so, I'll just be glad to see my guy with a little energy. They've decided to switch some of his maintenance fluids to have less potassium and glucose and they've decided to hook him up to oxygen saturation and heart rate monitors all night.
Max looks and feels really sick. The nurses who have had Max many times have never seen him this bad. He has virtually no personality and does not seem comfortable. He's on morphine to try to offer some comfort but that makes him sleepy too.
Please continue to root for Max to fight off this virus or whatever he's got and to get back to his old self. Special thanks to Margaret for staying up all night with him and for taking such good care during the wee hours. Thanks to Grace for napping today and for giving Mom a break.
Go Max! Grow Cells Grow!
Mike
Addendum as of Sunday, 8/31 at 7:14 A.M.
Dear Max's holiday weekend fans,
This morning I was told that Max's counts are 0.5. Yikes. As quickly and as sharply as they rose, they have fallen back down. He is also running a fever and he's on Tylenol. Today will probably lead to more questions than answers. Max has not been himself for 3 days now. Not at any point last night did he have any real "awake" periods. He's sleeping most of the time, and when he wakes he just grabs his ankles and poops. He's best described as a shell of himself. This is not the way we want to see our son. He's really sick and trying to fight off something. Any advice from the Hurler community would be welcome at this time.
More scared than ever (but not wanting to be scary),
Mike
posted by Mike Ciacciarelli
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