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Rehab Recap – Week 3

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ethan sitting and looking up

The Grief Behind Brain Injury

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Finally Making some Progress

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Hello & Welcome

The Reimer Family is a special needs family from Canada. We will update you on #MightyTimothy and #EthanStrong and hopefully inspire you along the way.

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@our.daily.adventures

our.daily.adventures

mom to #mightytimothy and #ethanstrong sharing our medical life journey one square at a time. Currently at Rehab after brain injury.
📍Ontario, Canada

We have a stable heart 💪🏻 He still has the P

We have a stable heart 💪🏻
He still has the Pulmonary Stenosis and one other slight change but nothing that requires intervention right now which is awesome! We will monitor his heart rate issues for now.
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His genetics appointment was initially supposed to be for a research study, but once they got his full history and did their physical exam they cancelled the research portion and switched it to an actual clinic visit. They will be doing a whole genome sequencing study to see if we can find a genetic link for things, and will also be looking for the specific gene issue that’s connected to the ANE. We will need to come up with a game plan for what we do in the meantime, as genetic testing takes months to come back.
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Ethan is still having issues tolerating feeds. We had him on pedialyte for 24 hours and he did great, however when he was switched back to his regular feed last night his reflux came back and he vomited again this morning. They’ve checked tube placement and it seems ok. SickKids wants to get a side view so we’ll get that (it’s on-site here so it’s easy) but they’re pretty sure placement is not the issue. We’ll also be increasing one of his meds to see if that helps. Every time he vomits we fear aspiration, and he starts coughing and sounds really wet when after he vomits so it’s definitely irritating his system in many ways. Hopefully the med increase will settle things down.
#ethanstrong

Ethan got to come home for the weekend. It’s inc

Ethan got to come home for the weekend. It’s incredible how much preparation and work it takes to bring him places, especially overnight. We had lots of fun with daddy, Timothy and some friends came to visit.
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We made the drive back to Bloorview Monday afternoon. Unfortunately he had a bigger seizure in the car - what an experience! Definitely not something I’d like to repeat.
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Last night was really rough. He was extremely restless and could not stay asleep. He fell asleep just fine but couldn’t manage to stay sleeping as he seemed very uncomfortable and his reflux was extremely bad as well. We’ve taken things slow today during therapy sessions so he doesn’t get too overwhelmed while being more tired, as both of those lower his seizure threshold, plus we’d like him to be as happy as possible.
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We’ve almost been here for a month. Time flies. The days sometimes drag out but the weeks fly by it seems. Tomorrow he has his big cardiology check-up and we’re meeting with the Genetics team as well. Big day!
#ethanstrong

Ethan had a rough day. His heart rate was sitting

Ethan had a rough day. His heart rate was sitting 150’s/160’s for most of the day and he was vomiting bile. He was otherwise fine. No fever, active, smiley and showing no signs of pain (Altho we’re trying to remember that his pain sensors may not be working great right now - which makes things rather tricky).
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We did the cardiac work up here, called cardiology and are monitoring for now. His numbers and vomiting has stabilized before bedtime so hopefully it will be a quiet night. He sees cardiology next Wednesday for his big check-up.
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Timothy is all ready to hand out his cute Valentine’s Day cards at school tomorrow 😍 he worked so hard on his cards and box and I can’t wait to see all the ones he’ll get from his classmates. Parenting is awesome 👏🏻
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We’re praying that tonight and tomorrow will be calm, boring and good. Bad days throw off his therapy sessions, but we just need to take things as they come and let Ethan take the lead.

Yesterday Ethan’s feeding tube accidentally came

Yesterday Ethan’s feeding tube accidentally came out which meant a trip to IGT at SickKids to get a new one placed. Because he has a GJ, placing them tube needs to be done under X-ray guided imaging. It was a tricky placement but the doctor successfully got a new tube in and things are back to normal on the feeding front.
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Reflux has been a bit more tricky again. It seems to come in waves. Reflux and not being able to manage his secretions as well, which has been waking him at night. Overall his sleep has improved. We’ve made several changes, and we’re not totally sure what made the biggest difference but we will keep things as they are with his new meds and sleep set up and just go with it.
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The last couple days I’ve really wanted Ethan to be able to eat. I’m not even really sure why. As everything, those kind of things come in waves. Our hope is that one day he will be able to, right now he’s just not ready and that’s “okay”. It has to be, because there is no other way around it. It’s simply not safe so while the desire for him to eat is there, his safety will ALWAYS come first. I think once he can tolerate g-tube feeds again and he can get some real food that way, I’ll feel a bit better. It’s the little things ❤️
#ethanstrong

A friend inspired me to write 2 Roses and a thorn,

A friend inspired me to write 2 Roses and a thorn, because we can acknowledge the hard things but need to remember there is more good in a day. So.
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🌹 we have each other. Our family unit is strong and it’s being upheld by an incredible support system, one that we could not manage without and are so grateful for.
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🌹the staff here have been absolutely incredible. Doctors take the time to make sure we understand things, nursing pours their everything into Ethans care and love him so much. The recreational team makes things incredibly fun for him and his therapist give it their all and do SUCH a good job working with Ethan.
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🥀 the playroom was too busy for Ethan this evening and it triggered 2 seizures. After he had been okay for a while we tried pet therapy and he started to show signs of being overstimulated again so we left there too. The reality of brain injury (and everything else he’s dealing with) really sucks.
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🌹we are here. And considering everything doing as okay as we’ll get right now. Yes it could be worse, it could also be better but we’re trying. Trying to keep pushing forward and find positivity along the way.

We sat down with Ethans rehab doctor today (well,

We sat down with Ethans rehab doctor today (well, I sat, Shane called in) to go over some diagnostic differences we’ve noticed and to get a bit more clarity on things.
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Ethan specifically he has Acute Necrotizing Encephalopathy (ANE). It’s diagnosed based on where it affects the brain and a bunch of other stuff that hasn’t really sunk in yet. With ANE the part of the brain that tells the body what it WANTS TO do can stay in tact, which is why mentally he’s very alert, but the part of the brain that takes those signals and then passes them on, telling each body part what it needs to do, is injured. That cross path is affected. Basically? From what I remember. There will need to be some new reading that needs to be done, the right terminology will need to be learned.
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Another thing with ANE is that there can be a genetic mutation present that can cause relapse if he were to get Influenza B. So that testing needs to be done and if he has it, any flu like symptoms will need to be treated much more aggressively to do our best regarding preventing a relapse. But, we don’t have those results yet, which is almost scarier than having a definitive yes because now we’re walking on eggshells.
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ANE is rare. It can be really aggressive. It hit him hard, but fortunately the treatment made a big difference. He’s young, his brain can rewire if needed. The hope is that he will recover as much as possible, the possibility for longer lasting damage is there. Time will tell. His recovery path will be lengthy but the hope is slow progress as time goes on. Fast would be awesome but slow is more realistic. We all want our children to be unique. Until that uniqueness puts them in danger. You don’t want a kind of unique that baffles doctors and set them apart how Ethan has been. However, he is still SO loved and we will continue fighting with and for him every single day. #ethanstrong

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Canadian Mom Blog 2020