Ethan was admitted to Bloorview Rehabilitation Hospital on January 20th. Monday was spent arriving, meeting the team, getting to know the facility a little and settling in. It was a very busy day and we got lots of information thrown at us.
We had our first full day. It’s been something. Being here really makes everything feel so much more real. Our baby suffered a significant brain injury and we don’t know how things will turn out. Time will tell. The expectation and hope would be that he comes as close to his previous baseline as possible, but when it comes down to it, we simply don’t know what skills he will relearn, which ones will take longer and what could possibly be affected long term.
And then there is the fear of relapse. I won’t even get into that right now because that’s a whole new rabbit hole.
We are so grateful to still have Ethan. We’ve been close to losing both of our boys and it puts things into perspective a little different. There is, however, still a grieving process we are currently dealing with. We’re grieving the loss of the “old Ethan”
Ethan has been getting up shortly after 5 am which makes for long days. He normally sleeps till 8, but his room is darker and he’s more familiar with his surroundings. We’re hoping that as he gets to know this place, that 5 am wake up will get pushed back so he gets more rest.
He tolerated his therapies pretty well today. He’s been cleared to go swimming, so starting next week he will get to try out the pool. I think he’ll love it – he always has so that should be fun.
We’re trying to make use of the playroom as much as we can. It helps pass the time, allows us to meet people and gets him moving in a way that’s fun for him – all good things!
Our first team meeting has been booked for in 2 weeks, at which point we should hopefully have a better idea of how long we may be here. No one will REALLY know, but it will be part of the discussion. We’ll just keep taking it one day at a time. As we get to know the hospital and staff,
I’m sure things will start to feel like they’re running a bit smoother. At least I hope so.
I do miss home. There’s no place like it. Our family has been separated a lot these last 18 months and I really hope this admission will be the last in a long time. That once he’s home, we get to stay home. But for now, we’re here, and we will make it work.
Today was rough.
Ethan had a really bad night, which set the tone for the rest of the day. We had to end therapy early because he just was not tolerating it. He was absolutely miserable.
He did take a good nap this afternoon (and mama got a little one too) and he was much more excited to play in the playroom before bedtime. Little does he know that even the playroom is therapeutic 😝
Missing each other.
This isn’t easy.
But we know he needs it and in the long run, this will give him a much better quality of life, and faster too. That’s the hope and goal, and somehow, on days like today, that’s what we need to remind ourselves of.
Easier said than done tho on days like today.
Hopefully, tonight and tomorrow are better.
We had another early night – they will now add a medication at 3 am to hopefully help him sleep through the night better. He was VERY irritable overall today. We didn’t make it through PT/OT because he just wasn’t tolerating it.
He also has been more fisted again. He got little fabric splints today we’re going to start using for his thumbs because when he does relax his hands, his thumbs don’t. Overall his hands have been really tens again so we’ve been working on relaxing those.
They did a celebration today for Chinese New Year so we went downstairs to watch. He got a photo with the dragon, Altho he wasn’t quite sure about it.
He’s cutting one of his bottom molars too. So his cheek is super red and that’s probably contributing to his overall misery.
Please pray that he can start to sleep better. He really needs the rest (as does mommy) so he can continue to heal and recover.
Weekends are pretty slow. Lots of kids are able to go home to get a break, which is great. We were too drained to make the drive this weekend, so we hung out here. We did go out with a friend for a bit which made Saturday go by much faster and gave us a much-needed break from these walls. He’s back to waking up too early. I’m really hoping he will start sleeping better at night, as those short nights/early mornings set the tone for the rest of his day, and not in the best way, unfortunately. He’s just so restless when he tries to fall asleep. I’m pretty certain he wakes up between 4 and 5 normally but has always been able to fall back asleep on his own, but right now he’s really struggling with that.
You can read more about why he is at a Rehab Facility here