At around noon, they believe Ethan went into SVT. His little heart was racing at 200 beats per minute for no “good reason”. By the time we were finally able to get an ECG reading his heart rate had already come down (which was good! Altho it did take quite a while to get that reading so he was sitting rather high for a “decent” amount of time). Once we got to SickKids his heart was very well behaved and Cardiology wanted him monitored for a while to make sure it wouldn’t happen again shortly after the initial episode. They’re saying it sounds pretty convincing that he went into SVT, but we can’t 100% know unless we catch it on ECG. They discussed started meds but decided it would be better, for now, to wait and see how he does as we don’t want to give him meds unless he absolutely needs them. We’ll be keeping a closer eye on his HR with much more frequent checks and need to bring him back to emerge if it happens again. Hopefully this won’t be an ongoing issue and we can soon relax a little more about it. Never a dull moment with this little man
Our no-sleep streak continues. We’re trying to figure out how to get this little guy to sleep better. We don’t want to pull out more powerful meds unless we have to, but I think we’re getting closer to that point because he’s not sleeping well which affects his days and therapy sessions. His brain needs sleep to heal as well.
We’re continuing our days as usual, while keeping a closer eye on his Heart Rate. Routine is slowly kicking in and faces are becoming more familiar.
Last night Ethan got pretty close to being sent back to SickKids. His HR started climbing again at around 11:30 pm. He also had a seizure shortly before 11, so we’re trying to figure out if there’s a relation. The doctor would be more convinced it’s related if his HR stayed elevated with the seizure and stayed up, but there’s a break where his heart rate is fine. They spoke with cardiology and his HR did start to settle so he was able to stay at Bloorview and he fell asleep around 2 am.
We’re starting to notice him favour/be more in control of one side than the other, so we’ve been working on trying to balance things out a bit. He’s got much better control of his right side and doesn’t like us pushing him past what he wants to do, which would basically consist of lying down and watching the bubble machine in the Sensory room. But, we do it anyway because he needs it and things will hopefully start to get a bit better day by day.
We did finally get around to going swimming tonight, and he absolutely loved it.
Dystonia is a movement disorder in which a person’s muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body. Dystonia is now something we are dealing with. It complicates things for his recovery as we now need to control this, and teach him how to counter these movements on top of his.
Friday & Weekend
We got a weekend pass to go home, and because all the therapists were in training, Ethan had no sessions today so we were able to leave Friday morning. When it’s a 3+ hour drive, that makes a huge difference.
Unfortunately, we came back early, we weren’t sure if Timothy was starting to show signs of a cold, and we just cannot risk that exposure right now. While he would still receive his therapy sessions, he would not be allowed to leave his room otherwise, and he gets extremely agitated in this room, so not leaving would make things much harder than it already is.
It was good, but hard to be home. Now that we’ve been to rehab we’ve learned the severity of Ethan’s state so being home and having those memories of how things used to be, was quite emotional. Plus needing to leave, leaving behind home again, was hard too, not just because we did that early. This journey is hard, but we will continue to take it one day at a time.