Another day without meeting officially with the neurology and genealogy teams, and with the holiday tomorrow we don’t have high hopes for it happening until Friday or even next week. Still, the neurology team popped by today and provided a sneak preview that there are two genealogical surprises they’re noticing from the testing: one that is often associated with infant seizures, and one that is associated with a metabolic issue. So maybe a metabolic disorder is back on the table? If you’re also having trouble keeping things straight, join the club.
Rowan’s desaturation episodes from yesterday continued, and many of them also included behaviour more typically associated with seizures. This is a definite change; previously most of his seizure activity has been subclinical (not picked up just by looking at him), but today he had a dozen or so minute-long periods where we could see repeated, rhythmic jerking of his hands, sometimes accompanied by him turning a deep red. There’s no way to definitively know it they were seizures without the EEG on, but the neurology team was in the room for a couple of them and were pretty convinced they were. Still, these are short bursts not likely to cause any damage to the brain and he seems to pull out of them himself fairly quickly. The more worrisome thing seems to be the “sometimes not getting enough oxygen” part. It’s scary stuff, but we keep reminding ourselves that we’re currently a long way from any type of worst case scenario. 99+% of the time he’s breathing room air, breathing on his own, without triggering support or additional pressure from any devices. He’s young enough that the breathing center of his brain could still be maturing and strengthening. Long-term options for respiratory support exist, if it comes to that. We have a lot to be grateful for.