Tuesday, November 24, 2009

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!




Jeanie said...

Big steps indeed with the trach removal. I hope the cognition baby steps will turn into big ones soon.

Willoughby said...

Wonderful news! Having the trach out will probably make him feel so much better. Walking a few steps and sitting upright sounds great, too. I can imagine how exhausting it is for him.

I wouldn't worry too much about him being slow to respond or staring into space. He's been through so much in the last month, he's probably still pretty weak. You might be onto something with his meds, too.

I'll be keeping my fingers crossed that the trach removal goes smoothly!

Rootietoot said...

After any major medical event (borth of babies, serious illness, etc) I've had to adjust my bipolar meds. He may just need that. Right now, the lungs the lungs. Since his affect is toward the slow rather than the manic, I reckon it will mean dialing down rather than up, and honestly, that's easier to deal with for everyone else.

Good news re the trach! Normalcy is looming on the horizon!

yorksnbeans said...

It takes a long time for meds to totally get out of the system, so that could be why he still seems somewhat sedated. His motor abilities might take a bit of time as well. He seems to be taking some great steps forward otherwise!! Yeah! :-)

Mrs. Hall said...


Beth said...

Re: the “affect.” Perhaps it takes quite a while for both the body and the brain to adapt to the world after such a long absence?
Still, so many big steps, so much to be thankful for…

Ashley's Mom said...

Wow! He is making such good progress now. There will be no holding him back, I'm betting.

litzi said...

I don’t want to go there---the possibility that he has brain damage from oxygen deprivation---at least not yet. PLEASE stay focused on all the positive steps that Big Kid has taken and allow the fears about the what ifs to sort themselves out over the next few days. A lot easier said than done but don’t obsess on a myriad of negative emotions.

Fingers, toes and eyes crossed that Big Kid gets over this hurdle as well as he as all the others.


Boozy Tooth said...

I heard on the news yesterday about a guy that was in a supposed coma for 20 years and suddenly woke up. He was able to relate that he heard every word and understood everything that happened to him for that 20 years... he was just unable to communicate. How amazing the brain is. It also knows when to block memories to protect tender psyches. I hope Big Kid remembers how you stood by him every second and forgets the rest.

Congratulation on all this progress. This will be a true Christmas to remember, eh?

ntsc said...

Having had to relearn to walk at age 37 due to an AVM (similar to stroke but due to congenital blood vessel mal-formation in the brain), I felt that my intellect had taken as serious a hit as my right side.

20 some years later I only notice anything, physical or intellectual, when physically very tired.

Charlie said...

Like the past 31 days, we're with the Big Kid all the way.

Amazing progress, M.

Cloudy said...

He is doing SO WELL! Whenever I spend even just a weekend in bed, I am pretty out of it & slow to respond. A month in bed would put me in a major daze. He will continue to become more and more alert. It will take a bit of time. Hang in there. Continuing to send good thoughts towards successful bigger steps.

Anonymous said...

Oh I hope it's a chemical imbalance fixed by normal diet and activity and drug adjustments, Attila. Imagine how weak he must be if sitting up is so hard. He must be EXHAUSTED from all the hard work of healing.

stinkypaw said...

Big steps indeed, yay! *hugs*

St Jude said...

Galloping away there... don't worry about the other stuff, the body has to conserve its energy to heal. He's been through so much it will take time to get him back to full big kid status. He will get there and fully in tact and as you know him. xoxo

The Quacks of Life said...

wishing you luck Attila

Green-Eyed Momster said...

Gosh, You've all been through so much. Sending you hugs and I hope that you and yours will have a Happy Thanksgiving.