Note to self: 2 piece PJ’s are a big no. As we found out shortly after 4 am at the beginning of this week when Ethan yanked his tube out! Which meant another trip to SickKids to get a new one. They placed a combination button this time so we can start trialing some stomach feeds. It’s better to try it while we’re here and he’s closely monitored. Hopefully, he will tolerate it well and we can get that part of “normal” back. We’d love to get back to regular G-Tube feeds which will then give us the option to do real food – but one step at a time.
It was quite incredible to see how SickKids is managing this and trying to keep everyone safe. It was very quiet and organized. His contact with people was very limited, as was his time spent in spaces that could expose him to others.
His tone is still a big struggle. His ankles are much tighter and he’s overall really tense. Hopefully, his SMO’s will arrive soon and they help.
Thursday evening brought on a rough patch. Ethan had a 10-minute seizure. Everyone worked together to help our little guy out and he managed to come out of it after getting his rescue meds. Shortly after he was very unresponsive, but the doctor said to give him an hour, which we did and his response improved – he was DRAINED.
10 hours later he was hit with another long seizure. For 16 minutes we stood, watched, made phone calls, got frustrated that the Ativan wasn’t dissolving proper. He finally came out of it. Any longer and he’d have been rushed away! The doctor ordered a stat Tegretol level to make sure his meds were still at a good spot. His day was rough. He was tired, weak and overall pretty miserable, and I don’t blame him.
Bloodwork showed that his body seems to be metabolizing his Tegretol faster (or maybe one of his other meds is affecting the level a bit) so they increased his dose. We noticed several small seizures throughout the day but nothing too big. His rescue medication was also switched to something different, as the tablets don’t seem to be working right now.
Unfortunately Saturday morning we had a repeat, however, we learned the new rescue med is more effective and it “only” lasted just under 8 minutes. He’s been extremely drained with all this but having a hard time sleeping as he’s also really restless.
They’re re-checking his Tegretol level on Monday and we’re really hoping the increase will help settle his seizure activity again because it’s extremely hard on him, and heartbreaking to watch. I wish I could take his place, for all of it. But I can’t, we can’t, so we’ll keep doing our best to support him throughout this journey.