Day 32

Another good day. The physical therapist worked with Big Kid's legs and got them tuned up with his brain. The occupational therapist worked with his upper body and hands. I asked if she could leave a few items for him to work with when he was alone, so she left a ginormous rubber band, some hand weights and a squeezy thingy. When he was working his chest muscles, it compressed his lungs and he was able to hack out a lot of stuff.

The physical therapist got the kid to sit up on his bed with his feet on the ground. This is the first time he's been vertical in over a month. He turned green and listed like the Titanic before she went a$$ over teakettle. The PT then tried to get him on his feet, but it was too hard.

"Do you want to get back into bed?" the PT asked. Big Kid shook his head and held up his index finger.

"One more time?" The boy nodded. And up he was.

He was only on his feet for a few moments, but long enough to get him into a chair. His whole body was shaking with the effort. He was able to sit there for almost a couple of hours before he was worn out.

A couple of nights ago, Big Kid dreamed he was dead. He still doesn't consciously remember anything, but I suspect that over time some of the memories will come back. This was a perfect opportunity to tell him that he'd been in the hospital for quite awhile.

He was ok. Totally ok with it. No panic at all. Thank heavens!

Amazingly, since he's woken up, he hasn't experienced any panic attacks. He's remarkably calm. His emotions are very close to the surface---no surprise---but he says he hasn't felt any panic lurking around. He cries when it's time for us to leave and begs us to take him home, but knows that we can't. He has a phone by his bed now, so he can call us at any time.

Today, if all goes well, they're going to take the trach out. Wonderful big step!

I'm worried about his affect. It's very dull. Cognitively, he seems to be ok, but he's very slow to respond when spoken to and stares off into nothing quite frequently as if he was drugged. If I didn't know better, I'd think he was sedated, but he hasn't had any pain meds or sedation for almost 5 days now. He still can't write, although he seems to be able to spell and read without much difficulty.

I don't want to go there---the possibility that he has brain damage from oxygen deprivation---at least not yet. I think that possibly he’s being overmedicated on his psychiatric meds.

They’ve been worked to balance out the stimulant medication he takes for ADHD. The stimulants make him manic, and some of the others counteract that. He hasn’t had the stimulants or any caffeine since he first fell ill. Maybe he’s getting too much depakote now. I’m going to run that by his doctor when he rounds later on this morning.

Wish us luck on the trach removal. Big Steps!

Xoxox

ATM