Charlie in Hospital 2022

He made it! Day 41 was his last day in the hospital. The first thing Charlie said in the morning was "am I going home today?" We had breakfast and packed. The doctors came round and then put in the discharge order.  Charlie took a walk to the gym to say goodbye to people. Then, at around 10am Aly announced she had arrived and I started running things down to the car.  Aly had decorated the car and Charlie was thrilled to see it. He also got a round of applause from the traffic management team, which he acknowledged regally.  The front of the house was decorated too!  He made a cooking video in the kitchen and got to play with Henry. As did I, which I had been missing. And that's it. That's the story. Except it's not. Charlie has out-patient physical therapy 3 times a week and he still has some way to go getting his strength up.  But the surgery did what it was supposed to do. To truly measure the success will always be a bit difficult for me because so much of i...

FBI! Open up!  I have never, of course, experienced an early morning raid but I assume it feels, at first, like what happened this morning. When I IM'd Aly about our experience, it went like this: David:      The secret police came barging in this morning at 545 and demanded to see our papers Aly:         hi neurosurgery! I get it. They have surgery coming up and doing rounds needs to get fitted in before that part of the day. It's still jarring, though, when someone comes into your room shining lights before you even register where you are. The good news is that the visit was necessary because neurosurgery need to sign off on him getting discharged tomorrow. He was admitted as a neurosurgery patient on Day 1 . The other good news is that, unlike me, Charlie actually managed to go back to sleep after they left. He may have had to roll over to show his incision but I had to get out of bed to close the door.  Part of today's day included a...

Charlie slept through the night without incident and, although he didn't have much of an appetite for breakfast, he nibbled on some things.  I should have mentioned yesterday that, when people were checking on him after his throwing up he made a point of telling each person that he was going home on Tuesday. It was never a question. It was never an attempt to begin a conversation about that. It was always just stating a fact that was not up for discussion. This continued when we had our regular visit from the on call doctors. Most of the visits from the doctors that I have participated in since we came to the 12th floor have been something close to courtesy. He doesn't need a daily doctor visit. However, today we had something to talk about. Between us we agreed that there was not a need for a bunch of tests like before . Let's see if he keeps improving. Sundays are for relaxing, after all. Charlie wanted to take his bike for a ride again so we did a few laps of the 3rd fl...

I hope that giving that title doesn't tempt fate. We have Tuesday in the paperwork and part of his PT session this morning was doing the assessments to confirm he has met his goals. Apparently that includes checking he can get himself up if he falls. I get it that they want to know if he can get up, but pushing my kid over seems rude. Opposite to yesterday , Charlie was almost hyper today. He wanted me to film him so he could make a commercial . He had the idea of the commercial at about 8:45 and the edited version was up on YouTube by 9:15, I think. No post-production worries on this one. We did logos and flags. During the flags, Charlie was telling me that he would prefer it if more countries put their map on their flag like Cyprus and Kosovo do. After a short OT session in the afternoon, Charlie's mood took a bit of a dive. He came back hot and quiet. Then, within a few hours he mentioned that he might need to throw up... then did. All contained and under control but still u...

The post's title is actually about a distinct lack of energy. Charlie was a bit grumpy and tired this morning. I wasn't much better and had one of those days when everything felt like it needed more effort on my part than normal.  Aly very kindly took a drive into the city to drop off some clean clothes for Charlie and a care package that was mostly for me.  Charlie had his therapy sessions and continued to do well. Following a request from me for some tips about to help him with something, I had 10 minutes with him and his occupational therapist. I was very struck by how very well she knows Charlie already. When I processed that thought I was reminded that I am literally writing a post with title Day 37. Yeah, you get to know someone after 5 weeks.  I have also noticed over the last few days how very popular Charlie is around here. I acknowledge my own bias but, for example, when I said that I thought Charlie was not in a great mood, the answer was an emphatic - "no way,...

Charlie has been really good since the surgery at knowing what he's capable of. In fact, he's needed a little encouraging to test himself. I have appreciated his caution. This last few days, he has been so good on his feet and has been on his feet so much in therapy that he has been making moves to do things. It has me a little more on edge. Don't get me wrong, it's great. It's progress. Essential progress. I just don't want him to hurt himself. This morning he was ready to start his therapy - showered dressed etc. - but he was 10 minutes early so we got him comfortable on the sofa and gave him his book to read  his tablet and headphones while I went through to brush my teeth. "Daddy!!" I hadn't heard a thump so I assumed that he had got himself in a position that he couldn't get out of and wanted help fast before he fell. I rushed out, toothpaste in mouth and toothbrush in hand; No. Regular readers may have already guessed. As he was turning o...

Charlie is reading the blog. I feel like if anyone wants to know what people mean when they say "that's meta" people can use the example of me sitting here in this hospital room writing a blog post about Charlie reading a blog about Charlie. It was a really good day here. Our morning routine went very well even though I was on a conference call that started at 8. At 9:30 he walked to his therapy (he had been using his wheelchair but taking his walker and often walking back) and was full of joy each time I saw him. The desk I set up for myself here looks out through the door and I saw him walking by during his physical therapy session and heard him chatting. I wanted to burst out and say hi, like when I went to their school's field day and I was the mascot:  I didn't, though. I sat at my makeshift desk and felt quietly proud. There was a girl that was here who would walk the loop of the floor with her walker a lot. I remember thinking "why is she here if she c...

Today was the first day that I really tried to work from the hospital. I've taken calls and read emails (which is the total of what Charlie considers my work to be) but I have done so as an aside to my main thing being with Charlie. When I have changed on Thursdays, I have booked them as days off. It was amusing but exasperating that in the time period of 9:00 to 9:20, I was on my most important call of the day and the room was full .  3 doctors, 2 therapists, 1 nurse. Then, the therapists took Charlie away and the update call I was on was over and I was alone. Everything Everywhere all at Once. Charlie was amazing today. As he walked back to the room for his lunch break, I was on a call but snapped this shot from my makeshift desk area. We had lunch together then he left for more physical therapy. I was told in the report that he climbed 12 stairs up and 12 back down. When I asked why they didn't use the elevator, I don't think they got my joke and, so, we moved on awkward...

It's Independence Day in America. Americans are celebrating (as I read on Twitter ) freedom from aristocratic nobles with damaging and unpopular policies that we can’t do anything about. The independence that Charlie is working towards is to not need help making his way around. He had that independence before the surgery but it was waning. With that journey in our mind, it was good to note that there was therapy on the schedule on the holiday Monday. Talking of the schedule, I got to experience first hand something that Aly had spoken to me about. Charlie really does not like it if he doesn't know the therapist that he has a session with. Aly, who is much better about speaking up about these things than I am, made a point of talking to the planners about this and they agreed to build his therapy around key people. This morning he asked who his sessions were with and he "did not know" the person that he was with at 11. This was around 8 and he mentioned this 11am sess...

Sundays are observed as a day of rest in the IRU so there are no scheduled therapies. Charlie gets quite excited about this freedom to do whatever he wants, which makes me laugh because he then chooses to do the things that we do a lot of anyway. So, after breakfast and shower, it was back to the quiz for a bit. Determined to come up with something else, I suggested arts and crafts again but got a thumbs down. Me: How about Lego? Charlie: Can I make a video of it?  In Charlie world, making a video of it is the negotiating equivalent of cheese sauce on the broccoli.  We built a Lego car (which actually wasn't Lego, which led me to a bit of bedtime research about the patent Lego do or do not have on Lego blocks because these blocks were exactly like Lego). As a treat, we went on a trip to the McDonalds in the joining hospital to pick up lunch. I still ordered from the hospital menu in that "we paid for it" way. Turns out he wanted a snack later and his sandwich was just the...

I know, I know. I am always going on about the hospital at the weekend. This one is special, though. It's a holiday weekend with the July 4th falling perfectly on a Monday giving everyone the chance to take a long weekend. So, it wasn't a surprise to me that the therapy we had planned for Saturday got canceled because someone called in "sick". Though, of course, with COVID being everywhere still, it's actually totally possible that the person is sick. Get well soon! Charlie did get to go to the gym and have supervised play - it just wasn't, technically, a therapy session. That gave me a little time to finish some work stuff. When he got back, we made our plans for the afternoon. Charlie wanted to go for a bike ride and, you guessed it, make a video. This really worked out perfectly. He gets some exercise, we get out of the room and, when he gets back, he has a load of footage to trim down to whatever he decides. To add to it, when we were on our adventure, we ...

During occupational therapy today, Charlie was informing people that it was Canada Day, so he painted a big flag. He also got a visit from the editor that we mentioned yesterday and he dropped off the information that they had worked on and copied it over to Charlie's computer. Charlie got straight to work on a trailer for his movie . He then started on the director's cut version of the movie itself, which he'd already worked on with the professional. I think that this is what's known as post-production issues. At 2pm the internal hospital channel ran an interactive game called Acron . The hosts were on level 16 wearing a VR headset and being a tree. The players (including Charlie) were squirrels trying to steal the acorns.   It took a little bit to work out what was going on but it was a good idea. I cannot tell a lie, when Charlie got tired of it, I took over and had fun. With it being the 4th of July weekend, the scheduled therapy sessions are going to be limited so...

I mentioned last week that we swapped out on the Thursday and we decided to do that again this week. This time Henry was in his summer camp so it was a very quick and all-business style handover because there was heavy rain in the area and driving around here is already nuts so you honestly can't imagine how bad it is in heavy rain. Truly terrifying. Thankfully, Aly made it home without getting caught in the rain. He was excited to see me and excited to tell me about the plans for his afternoon. The plans included a session with a professional video editor. So get yourselves mentally prepared for... When she dropped him back to the room the recreational therapist described getting "the full Charlie experience" with Charlie during their time. I knew exactly what she was describing. Charlie has a shoulders up squee when he gets excited and a very infectious enthusiastic giggle when he really likes something.  With his planned sessions complete, Charlie and I got back to the...

If you read the title of today's post, you've probably guessed what Charlie did today; Apart from that little adventure, it was a routine day for Charlie at the hospital. Stronger every day is the motto of the 12th floor, I learned, so expect me to be using that a lot in the coming posts. Back at home, one of our cats is getting up to all kinds of mischief with one of Charlie's stuffed animals.