Since being discharged on July 9 the three of us have had a wonderful time at home, learning and exploring and figuring out our new life together. Besides a couple of probable seizures in late July, which prompted a slight dosage increase in one of his meds, we haven’t really had any health concerns until this week.
That changed this past Monday evening when Rowan had an 11-minute seizure, which was long enough that we decided it was worth a trip to the emergency room at Guelph. They ran some blood tests and eventually discharged us without too many concerns, but a half hour after we returned home early Tuesday morning he had another seizure followed by another an hour or so later. After that second one he showed signs of a lack of oxygen, so based on the advice we’d been given by his medical team we called the paramedics. One ambulance ride later we were back at Guelph General, where they recorded yet another seizure and a significant desaturation event. He was given another anti-seizure medication to stop the cycle and we worked with the neuro team at McMaster by phone to come up with a new plan to increase his meds over the coming days.
By Tuesday afternoon we were back home and comfortable with this new batch of seizures. For one thing, they are easy to identify in a way that a lot of his seizures in the first month weren’t. We’ll see his left eye squeeze tight, some grunting, constant lip smacking and tongue movement, and occasionally twitching and clenching in his left arm/hand. There’s something reassuring about being able to look over and pretty quickly identify whether he’s seizing or not without having to just guess. These seizures started to pick up as the week went on – just 1 on Wednesday, but then 10 on Thursday and 15 on Friday. While we were okay managing the seizures themselves, they were very often followed by an oxygen desaturation event which can be dangerous. On Friday evening we drove down to McMaster and after seeing one of the seizures and desaturations in action, they decided to check us in and regroup a bit.
So that’s where we’re at – at McMaster in the pediatric inpatient ward, playing a bit with med dosages, giving supplementary oxygen when he needs it, and taking the days, and the seizures, as they come. The medical team, as always, is absolutely stellar. While we appreciate the many offers of help we’ve had we really don’t need anything at the moment, but we’ll be sure to reach out if we do. Rowan remains his happy, hungry, and curious self which is very comforting to everyone.