Month: July 2019

Not sure who else may be following this, but I’ll post a recent update.

Seems like Cameron is starting to get a little more strength back in his left side. In the past 24 hours, he’s been able to get a better grip on most things and can hold his video game stuff a lot better, showing improvement there. Also gives a little emotional boost.

Looks like he’ll be discharged around 2PM after the backup neurologist came by. She’s not worried about the weakness and is actually happy it appears to be getting better. She says the weakness could last between three days to two weeks and we’ll continue an aggressive steroid regimen to do our best to manage this.

He has a check-up right after school starts, so that is kind of the target we are shooting for on this getting better. I really hope the weakness doesn’t became a problem during school.

At this point, we’re just running out the clock while Cam takes a nap. When the hospital staff gets all their paperwork done, we’ll get moving.

Since my last update, Cameron took an evening nap and then went to bed around 10 last night. The sleep was pretty fitful given he was being checked on every hour or so.

This morning, the first major side effects appears to have gone. He had some redness around his eyes, but that appears to have cleared from what I can see, so the tape must have been an irritant to him, or he could have been allergic to it.

He did wake up at 2AM to use the bathroom and he was steady then, so at least any weakness he may have had may be confined to his hand/arm area. He’s still sleeping now, so I can’t assess that one, which is one of the main area of concern right now.

The docs are still hopeful everything is just the swelling in the brain. They have been hitting him with higher doses of steroids to try and get some control and they we’ve seen some improving, but he still has enough weakness in his left hand/arm that he put his Switch done, which he would never do voluntarily.

He’s also got a little rash about his eyes, but it appears to be localized there, so the team thinks it may have been a reaction to tape they used there during the procedure. Because it appears to just be there, they don’t think it’s a side effect on them drugs, but we are monitoring it.

He actually went to sleep about 20 minutes ago and I’m going to stay in ICU for the night. Hopefully, he’ll crash all night.

They are going to have some physical therapist come in tomorrow to re-evaluate him.

When Cam finally started being able to wake and be aware of things, we started noticing some complications. His speech is a bit slurred and he has numb hands and is a bit uncoordinated with them.

Surgeon says it may be some swelling in the brain, so we are upping the steroid that is supposed to control this.

He’s slowing waking up and mad at us when we try to ask him questions, so maybe he’s al easy back to normal. He’s drank some water, but surprisingly doesn’t want food yet, which is weird since his last meal was about 8PM last night.

Sounds like everything went swimmingly. He’s being moved to ICU for monitoring in 10-15 minutes. We’ll check on him soon.

Nurse just called to say he is in surgery now to have the lasers implanted.

He just went back.

We are waiting to go back. Cameron is all set, IV in place.

Sounds like a 4-5 hour procedure after all. They’ll go in with two lasers, basically front and back, to make sure they can get it all.