Charlie in Hospital 2022

Most people that are reading this know that Charlie and Henry were in hospital for a long time when they were born. That's a whole other blog . We got to know the things that the hospital offered but, since C&H were tiny babies, there was a lot of things that were not what we needed but it was interesting to know about and part of what Texas Children's Hospital (TCH) does to make it one of the best children's hospitals in America. For example, they have three therapy dogs (we went to pet one a few weeks ago ). Another example is that the hospital has a Music Therapist. In a previous meeting with the music lady, Charlie mentioned that he would like to play guitar. So, she arranged for him to borrow a guitar and, on Tuesday, she came and jammed with him. Pretty cool. I'm not saying I am the dad in this Onion article but I do notice that Charlie and Henry have a very broad music taste. I listen to a lot of music now that I know I wouldn't have tried if it wasn...

Despite Henry's assertion that the menu Charlie picks from is awesome , it can feel a bit repetitive as the days turn into weeks. Aly suggested to Charlie that they could take a trip to the 3rd floor and order from the cafeteria. He loved the idea and they enjoyed breakfast together in the seating there. The seating is at the Texas Children's Hospital's Pavilion for Women which is where they were born. Aly and I ate in that area pretty often back in 2013. Neither of us smiled then so I like that Charlie brings his sunshine to the place all these years later.

 ... we have swapped again and I am back home with Henry and Aly is in the hospital with Charlie. As previously mentioned, Sundays means a day of rest. No therapy sessions. The weekend doctor stops by but Charlie's not a very fast moving case at the moment so the doctor that examined him yesterday is not going to see anything different today.  Charlie bluntly said "I don't know you" to his nurse on Sunday morning, who took it well and made it his business to change that fact. Charlie gave him an in by mentioning that he is a YouTuber. Talking of which, he spent part of the day working on a video of visiting the big train set in the hospital. Like and subscribe! Aly and Henry arrived around 3 and on the drive home I found myself looking at the logos on the cars and billboards in case I recognized any we couldn't get. Curse you logo quiz! After feeding Henry and making sure he was ready for bed I made myself a simple plate of spaghetti and fried eggs and, as I did...

I have mentioned before that the hospital operates a little differently at the weekend. I mention it again because I was here Friday and got a reminder of what everyone else's normal is like.  He had some sessions of OT and PT and did well. His scar is healing really well and each day he gets a little stronger. After, Charlie and I sat on the couch together. We did some more flag stuff. I liked Charlie's comment that the flag of Kyrgyzstan or, officially, the Kyrgyz Republic, looked like the XBox logo. The comment gave Charlie an idea. He wanted me to download a Guess the Logo quiz, so you can guess what we were doing for a big chunk of the rest of the day. We got stuck on one for ages and it was stopping us being allowed to move forward in the game.  We'd been having fun so I decided to cheat and take the answer. Tinder is a dating app so I am glad neither of us were particularly familiar.

One of the unintended positive effects of this time in the IRU is the amount of time dedicated to daily activities during occupational therapy. Things like putting on socks and shoes, for example. We have worked on that for years, of course, but there are also a lot of occasions where we are trying to get everyone out the door and it's just easier to do it for him (same applied for Henry for years). It's good to see the patient, trained professionals working with Charlie on these things and giving him the time he needs. There was an example of this for me this morning. We'd done our morning routine and taken a shower. I had put on his sandals (because I don't think this through very well) and we were ready to be collected. (We were playing with the filters on the phone, which explains the balloon. The crossed arm thing is a Charlie original, I hope, and not some cult sign that he's picked up from the internet). When the OT came to collect him at 9, she decided it wo...

My work have been very generous in supporting me taking some time off and work remotely to allow me to help while Charlie goes through this. An example happened on Thursday when, in conversation with Aly, it became clear that she would benefit from an extra night in a real bed so we planned a swap on Thursday afternoon instead of the original plan of a Friday change. Once the handover was complete, Charlie and I resumed our flag quiz. We needed a lot of clues to finish off the Europe flags. The Soviet Union and Yugoslavia have been broken up for more of my lifetime than they existed in my lifetime but I still struggle to remember all of the countries that didn't exist when I was in school. Charlie's favorite from Thursday was this: He asked me about the country so I, of course, said "historiography in North Macedonia is controversial, as there is a wide range of conflicting views about how to study and present the history of North Macedonia, as these can be affected by mod...

Monday was a mess and he wasn't comfortable enough to do his therapy sessions even when he wasn't off getting tests. Tuesday was better but, on Wednesday, the team actually stepped it up and decided to try and make up some of the time lost on Monday.  The reports are that he did fantastically well.  As a little bit of background, since he was younger than 3, Charlie has used a walker to help him walk. He got to the stage that he didn't need it unless he was walking a long distance - it tended to live in the car rather than in the house. Here's the 2016 version: A part of his physical therapy has been using his walker but he's only been limited to short periods. On Wednesday he stunned his mommy by walking into the room after his session!  They really do have all the right tools here. This tricycle is a great way of getting his legs moving without taking the weight and has been a big contributor to the (literal) steps forward. Another nice piece of news from today...

Tuesday morning brought the good news that Charlie had slept well and was feeling good. One more X-ray brought the news that he was no longer showing excess stool. Time to get this show back on the road. Part of the day was visiting a birthday party up on the 16th floor. The 16th floor is the Fun Zone and Charlie got a turn on the car racing game. If, like me, you ever get a bit snippy at the idea of children's hospitals looking for charity donations when, in fact, those same hospitals generate millions in revenue every day, it's good to know that most of the donations go to helping the kids that are in the hospital as in-patients have less of a crappy time by, for example, buying a giant Mario Kart arcade machine. Like when he saw the menu , Henry is jealous that Charlie gets to go to the 16th floor. With Henry still away, I took the opportunity to go in to the hospital again. Charlie was looking great and was ready to resume his flag game. Over the weekend, Charlie had starte...

We left the Sunday update with Charlie throwing up and us not really knowing what was wrong with him. He had a rough night with a lot of discomfort and vomiting. He had an IV put in again and was given fluids. Of course, the thing about being in a hospital is there are plenty of people that can help eliminate the possibility of this being something more serious than an upset stomach. So, X-rays etc. were ordered. He was put inside a giant donut. He started feeling better as the day went on. I arranged for Henry to go and stay with Aly's mom Suellen and I went in to the hospital to see him. The tests all came back clear - no appendicitis or anything scary. He did, however, have an excess of stool. So, for the second  update in a row, I am talking about poop. The conclusion of it all was that his big Sunday morning poop wasn't enough. He was given a bit more help and encouraged to keep drinking lots of water and get some more fiber in him. I left on Monday evening with everythin...

Did you know that Fathers' Day is 50 years old in America? The first Fathers' Day was 1972, I read. I got to spend the morning with Charlie, the afternoon with them both and then the latter part of the day with Henry. So, given the circumstances, that is the best I could ask for. It was a day that had a lot of changes in it, not just where I was and who I was with. Like a lot of people, Aly and I stay in touch via Instant Message throughout the day when we are not together. I'll share our Sunday morning chat because it's relevant to how the day progressed. Charlie has a history of intestinal issues that go all the way back to the first few days of his life. All that is explained in the blog about their time in the NICU. However, the relevant part here is that Aly and I discuss Charlie's pooping quite a lot. Sorry. He has a routine and routinely takes medicine to make sure that he routinely goes. Here's another relevant IM from Sunday; Things got better for Charl...

I did not cover myself in glory on Saturday. Charlie woke up at about 6am and that's been around his normal. Fine, I had gone to sleep early so was happy to help him get moved from sleep mode to sitting up mode and his breakfast was already ordered. I got myself a coffee and we sat and browsed for a bit. We did his post breakfast business and he wanted to take a shower later in the day because I told him that I was going to be giving him a haircut.  I wasn't paying attention to the clock so when his PT came to the door at 9am, both Charlie and I were a little taken aback. I knew he had sessions but I had taken my mind off of it and hadn't set Charlie up very well. To add to it, since it was Saturday, it was not his usual person and the whole ordeal upset him. When he left the room he was noticeably sad and I felt really guilty.  The good news is that he bounced back really quickly and the report from his session was that he did really well. She let him pick the music in the...

In line with the new plan, I took Henry to the hospital on Friday and we had lunch all together on the 3rd floor then everyone came up to the 12th for a little more time together. It was nice. Henry even got to go with Charlie on his OT session. Henry also got to look at the menu that Charlie chooses from every day and, let me tell you, he was obsessed. There are not enough !!!s in the world to fully do the scene justice. "Pizza!!!", "Buttermilk Pancakes!!!!!!!!" Once they'd left and after his afternoon PT session, Charlie and I settled in for a relaxing evening together. He mostly wanted to talk about making videos and ideas for future videos. He also received a joke book as a gift so we did a few of those. Why should you never trust artists? Because they're sketchy. Since I saw him the weekend before, there is definitely progress on how much weight he can take on his legs, which is great. The most noticeable difference was how much he can move his body aro...

I am back at work (mostly from home). There is a combination of reasons why these 3 days are thrown together in one post. 1) As mentioned, I am working  2) I am not with Charlie so not seeing his activities and his progress to report  3) My updates from Aly are that things are not particularly varying from day to day Tuesday saw him move from room 27 to room 26. 27 is by a door, a nurses' station and the therapy manager's office and it's a bit busy. Aly knew 26 was opening up and requested a move. We are all happier in 26. Tuesday also introduced us to the "stander", a device that let's him stand without putting all of the weight on his legs since they are not ready for that yet. Wednesday added Music Therapy to the mix, which Charlie reported that he "actually, quite enjoyed". Thursday was our first IRU family meeting. I wasn't there (work) but Aly said it was really good. The attending leads a group of care providers in a meeting with the famil...

As mentioned, Charlie is now on the 12th floor In-patient Rehabilitation Unit. It's all about getting him as much work done as his body can handle to make sure he recovers from the surgery and re-learns to use his legs after they have, effectively, been reprogrammed. Monday they had him pedaling around the 12th floor. There's a song I like by an artist I love named Teddy Thompson. A Step Behind is about recovering from getting dumped but the lines that keep playing in my head when thinking about Charlie are; I haven't re-learned to walk  It's hard to learn that

There are no therapies on a Sunday so Charlie and I rested and in the afternoon, Aly and Henry came and Aly took over from me. So, not much to report other than Henry accused Charlie of stealing his gouda joke from a joke book.

The air is getting hot (it was 98°F, 37°C in Houston) but I really just picked that title for all the Whigfield fans out there. After our swap on Friday, Charlie and I spent Saturday together with him having his 2 hours of therapy and the rest of the time being up to him and me to decide what to do. We made some more stop motion animation for his YouTube channel  (like and subscribe!) and we made up a game where we had to take turns making up jokes. My favorite from Charlie was "What did one cheese say to the other cheese?" "you look gouda today". It really felt like a live version of the infinite monkey theorem but we got there. We also played a game on the iPad called "I know that song!" It turns out Charlie does, indeed, know that song and he was quite pleased with himself. We learned that neither of us know any Chris Brown. I'm fine with that. I'm fine with that. As for progress, he did well in his therapy sessions and they are working at getti...

Charlie is now in his room on the 12th floor and, although this is a report of "Day 9" from a certain point of view, it's a report about Day 1, his first full day in the IRU.   The routine here is he is assigned a nurse and he also gets a visit from a doctor each day. I think the doctors are physical medicine and rehabilitation (PM & R) docs, also known as physiatrists. He is given a schedule where he spends time with a physical therapist and an occupational therapist. The plan is that he is going to have 3 hours a day of therapy on weekdays, 2 hours on a Saturday and a therapy free day on Sunday. On Friday (aka Day 9 aka Day 1a) he was with Aly in the morning and Henry and I came at 2pm to swap out. I got the low down from Aly, particularly that the door to the unit is outside the door of the room and it clicks shut loudly all night long. Writing this on Saturday, I can confirm this to be true. Thankfully, Charlie sleeps through it. The dressing has been removed from...

As mentioned in the post for Wednesday , we have started our routine where Charlie has one parent with him at the hospital and the other one stays home with Henry. So, this is the first post where I am writing without actually having been with Charlie. The main news of the day for Day 8 was that Charlie got a bed in the IRU so he is now officially a rehab patient rather than a neurosurgery patient. According to Aly, the move went well (he went from the 10th floor to the 12th floor). Also, according to Aly, the hospital have submitted their invoice for the stay on the 10th. We got the good news that Henry is permitted to visit on the 12th floor. We got the maddening and confusing news that Charlie's wheelchair is ready but that the supplier, who has to have a tech sit him in it and make adjustments accordingly, will not deliver it to the hospital so he has to go without it while he is rehabilitating in hospital and could really use a custom fitted wheelchair. On a lighter note, one ...

If you have been reading the blog, you may have noticed my gloating about what a good sleep I get. Well, last night I was on the couch in Charlie's room and, although it wasn't great, I had a good sleep. Before I went to sleep, Aly and I were chatting and when I told her which night nurse we had, she predicted a good sleep for me. Apparently, she is a nurse that prioritizes a good sleep for her patient and works to minimize the disturbances. Aly was right. I will say though that I did wake up and hear her whisper "wake up, I have your medicine" a few times and it was a bit like a creepy movie in my half asleep state. Try it tonight on your kids or partner.  The morning was a successful sit on the toilet then an OT session where he had a shower and got dressed. I learned that these things are known as our ADLs. Activities of Daily Living. On hearing this explained to me, Charlie frowned and said "that would be AODL".  Wednesday was supposed to be the day that...

An additional good outcome of the amazing progress that Charlie has been making is that Aly felt comfortable enough with everything to agree to leave the hospital and go home and get some rest. So, when I arrived this morning I handed Aly the keys and today is just Charlie and me. It has been a great day. At PT he did a lot of stretching muscle reps which he tolerated well.  Yesterday's General from Neurosurgery had today off so her replacement was a physician's assistant who was too tall and too handsome so I hope that we don't have to have him back again. He was pleased with Charlie's progress and reduced the amount of pain medication. We were given permission to go on an adventure so we went up to the 16th floor and met one of the hospital's therapy dogs. What with the tall and handsome PA and now a super-cute dog, I was feeling my status crumbling. For Occupational Therapy in the afternoon, Charlie did some really great work getting up off of a bench to standing...

I have ambition to be more imaginative with the titles of each post but, just like Saturday and Sunday , today's update is influenced by the day of the week. Hospitals are a 24/7 business, of course, but they really work Monday to Friday. It's just that they have coverage outside of regular hours. I took the day off today because Dr. Pain had told us the plan and I wanted to be around to help Charlie through it. Sunday night was not very restful for Charlie (and Aly), though he was asleep when I arrived at about 7. It's probably appropriate to spare you the details. Fill in your own blanks; Charlie can't get out of bed, has been on antibiotics and narcotics plus a regimen of medicine to make sure that those drugs don't lead to constipation problems. He was given some fluids overnight via his IV since there was some concern that he was not hydrating enough. The plan for the day was mapped out for us. I will use what Americans call "Military Time" because I...

I'll open with a couple of stories from Saturday after I posted but not justifying a part 2. Charlie's laptop, that can be seen in the photo at the end of yesterday's post is actually a hand-me-down from his grandmother. It is in great condition but, sadly, the power supply wasn't and yesterday it gave up. This left us with a dilemma - do we wait until tomorrow to get one or rush to get one tonight? We couldn't leave Charlie without his precious laptop so I headed out to get a new one. While I was gone, there was an alarm. Not a normal beeping like there is all the time in a hospital. This was different. Aly got up to see what was going on and when she looked out the door of Charlie's room, doors had automatically closed in so that the section of the ward was now closed off. It's a terrible state of affairs in this state of this nation that Aly's first assumption was that there was an active shooter in the building. It was a fire drill. So, to Sunday. I...

For the second morning in a row, my morning task was to gather some things from home. On today's list was the kids shampoo and body wash. Charlie was going to be getting a bed bath. The drive in on a Saturday is great and, when I got to Charlie's room, he seemed in a good mood. Aly reported that they had met his new nurse and that she seemed great. So far so good and it's only 8am! The bed bath was a hit; "it's like I'm at a salon", he said. He also is allowed to slowly sit up a bit more. This means that his laptop comes into play, which means he gets to compile his video story for his audience! Getting back to his video editing and noticing that he has 5 new subscribers is a pretty good day in Charlie's world. We were visited by Dr. Pain - she is the head of The Pain Team ®  . She was really great and she listened to our concerns about the night before and talked to us about what she thought the issue was. She proposed a new pain management plan that...

It wasn't long after I had got home when Aly started sending updates about how things had deteriorated again. Charlie was complaining that he felt like he was going to throw up. Aly tried to get a nurse but it was shift change and, although the hospital never admits this, you never want urgent help at shift change. With nobody answering the phone, Aly took to shouting in the corridor that she needed a nurse. The nightshift nurse apologized and got the throw up bag for Charlie and things calmed down again for about half an hour. Then he threw up on himself and his bed. They washed him off and settled him again and he had another difficult night. (I slept comfortably, thanks for asking. Nice and quiet and no lingering smell of puke).

The first night in the hospital for Charlie was never going to be great, let's be honest. He had just had his spine cut open and was told he had to lie flat - not even a pillow. So, is it fair to say we'd all struggle to get a good night's sleep? Oh, and how about if someone came into your room every 2 hours to take your temperature and blood pressure? Relaxing, right? So, not a very restful night for him. (I slept perfectly in my own dark, quiet bed with my lovely soft pillows, thanks for asking). The focus of the day is pain management because everything seems to be ok with the surgery site. We had a visit from the surgeon and the fellow. The fellow, we learned, has only 30 days left of her fellowship and she was in Charlie's surgery. She took a lot of time to talk to us and filled in a few blanks that we had about what had happened on Thursday. I think Dr. 30 Days might be my new favorite. We also had a visit from a member of The Pain Team (I think they are part of t...

At the end of Part 1 of Day 1 , we had been told that the surgery had gone well. Shortly before 4pm we were walked over to West Tower to the PACU to see him. Time for a little side story. During the COVID-19 pandemic, like many people, we were looking for things to do with the time that staying home was presenting us. I, again like many people, learned how to bake sourdough bread but I also decided to try and understand iMovie. iMovie, if you don't know, is a video editing software that comes installed on a Mac computer. Charlie saw me clicking around on it and wanted to know more. I didn't really get a chance to work on iMovie because that became Charlie's obsession hobby. After he had learned how to edit videos, he wanted content. So, he and I would make recipe videos in the kitchen and Charlie would edit them. Next up, Charlie wanted to put his videos on YouTube. Charlie loves his YouTube channel (he has 39 subscribers!) and refers to talking to "his audience...

We were told to check in by 6:30am and the hospital is about 30 miles from our house. Driving into Houston is a little unpredictable so we left just after 5am.  The process of getting him checked in and set up in the pre-op area was quick. We met with the anesthesiologist. He was a delightful man that offered Charlie the options for the smell of the gas; "monkey farts or smelly socks?" Charlie settled on Root Beer. He gave Charlie a medal.  We also met the neurosurgery team. The risks were explained ahead of signing the consent forms. "Death" was on the risk list just above where I had to awkwardly try and use a mouse to do something that looked anything like a signature.  All we needed now was the visit from the neurosurgeon himself. We had first met this surgeon back in 2013 when Charlie had the brain injury at birth that started us on this path. Back then I commented about how perfect his beard was. Everyone's in masks these days so great shaving techniques p...

On June 2 of 2022, Charlie had a Selective Dorsal Rhizotomy. Since there are a bunch of articles about what that is, I am not going to spend time trying to paraphrase them for this. I will just say that it is a surgery on the spine performed with the intention that it will improve communication between his brain, spine and muscles by going into his spine and cutting sensory nerve fibers.  The recovery is in-patient rehabilitation for several weeks. Back when Charlie and Henry were born, we did a blog to keep people updated and it helped give me (David, Charlie's dad) something to occupy my mind and has since been a helpful source of memories of that time. So, I decided to write a blog about this experience. The hospital is Texas Children's Hospital in the Medical Center in Houston, Texas. For those that know that hospital: Surgery was in Legacy Tower then we moved over to West Tower.