We made the drive back to Bloorview this afternoon. Unfortunately he had a bigger seizure in the car – what an experience! Definitely not something I’d like to repeat.
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.
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 canceled 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.
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.
We stayed at/close to Bloorview this weekend, partially because we’re still not quite back to baseline for his feeding tolerance. Saturday was spent just hanging out here and Sunday Ethan had a little playdate with his friend Nathan. Oh, and look who rolled onto his tummy for the (second) first time!