Wednesday, June 15, 2005
A bit of a setback
We thought that we would be in Ronald McDonald House by now, but Jacob seems to have some kind of virus. Poor kid, all the awful symptoms are back, and more depressing because he and everyone else expected him to feel better by now. Thank God that Jacob got his own stem cells instead of donor ones. We'd be sure he had graft vs host disease.
Last night was particularly difficult. Around one o'clock in the morning, desparate for something to make Jacob feel better, we gave him phenergan, an anti-nausea drug he hadn't gotten before. Soon I remembered why he hadn't gotten it. Jacob has what's called a distonic reaction to benedryl, and kids who react that way often can't tolerate phenergan. Two and a half hours of writhing, kicking, agitated misery later he finally fell asleep.
At least he got some exercise. I would say it was at least the equivalent of a two and a half hour aerobics class. Under the circumstances he's incredibly strong. And Lizzie assures us he will be able to clear the virus in a few days.
This has served as a wake up call for us to be more vigilant about limiting visitors. Evidently having too many people in the room, including the family, raises the total microbial load in the room air too high. Once we get to RMcD, Jacob will be able to have friends visit in the great outdoors.
Jacob's fundamental recovery continues to go well, even if he feels crummy. He's totally off the pain meds, and doesn't miss them. He's been able to maintain his blood counts without getting either platelets or packed red cells for several days. And despite what we might expect, his electrolytes are fine, something he's had a hard time with in the past.
One of the best reasons for getting off the meds is that he can occassionally get off the IV for a few hours. Here's a picture of nurse Emily hep-locking him yesterday so he could roam free for the first time in 25 days.
And here he is: Jacob Harvill, Unplugged:
And, while I'm on the subject, here are a bunch of other pictures from the last week or two:
The big kids at the hospital:
Young at the hospital:
Ann at the hospital:
Our newly painted room. you can't tell the ceiling is blue violet:
The painters:
So we'll just ride this one out.
Last night was particularly difficult. Around one o'clock in the morning, desparate for something to make Jacob feel better, we gave him phenergan, an anti-nausea drug he hadn't gotten before. Soon I remembered why he hadn't gotten it. Jacob has what's called a distonic reaction to benedryl, and kids who react that way often can't tolerate phenergan. Two and a half hours of writhing, kicking, agitated misery later he finally fell asleep.
At least he got some exercise. I would say it was at least the equivalent of a two and a half hour aerobics class. Under the circumstances he's incredibly strong. And Lizzie assures us he will be able to clear the virus in a few days.
This has served as a wake up call for us to be more vigilant about limiting visitors. Evidently having too many people in the room, including the family, raises the total microbial load in the room air too high. Once we get to RMcD, Jacob will be able to have friends visit in the great outdoors.
Jacob's fundamental recovery continues to go well, even if he feels crummy. He's totally off the pain meds, and doesn't miss them. He's been able to maintain his blood counts without getting either platelets or packed red cells for several days. And despite what we might expect, his electrolytes are fine, something he's had a hard time with in the past.
One of the best reasons for getting off the meds is that he can occassionally get off the IV for a few hours. Here's a picture of nurse Emily hep-locking him yesterday so he could roam free for the first time in 25 days.
And here he is: Jacob Harvill, Unplugged:
And, while I'm on the subject, here are a bunch of other pictures from the last week or two:
The big kids at the hospital:
Young at the hospital:
Ann at the hospital:
Our newly painted room. you can't tell the ceiling is blue violet:
The painters:
So we'll just ride this one out.
# posted by Ann @ 4:06 PM 
