Today the respiratory team decided to give Rowan a trial run without any additional breathing support. At about 11am they removed his BiPAP and let him breathe on his own. It made it easier to hold him, and it was such a treat to see more of that face for the day. He was also much more awake today, as the heavy doses of anti-seizure medication from a few days ago started to wear off.
Around 7pm this evening, Rowan had a major oxygen desaturation event. To give you an idea: normally you want to see 90-100%. The alarm goes off at 92, but that could be just a blip. I don’t even flinch until it gets below 85. Past concerning episodes have seen him in the mid-60s/low-70s. This time, for a brief moment, he was down as low as 49%. These events happen for less than 30-seconds—the team pops on an oxygen mask and he bounces back very quickly—but they’re completely baffling. The silver lining is that for this episode Rowan was equipped with an EEG, and the neurology team were able to confirm that the desat coincided with a confirmed seizure, which (as far as I remember) we haven’t officially been able to correlate before. It could be just a little hint toward what’s going on here. For now the respiratory support is not being added back, but if the frequency or severity of these types of events picks up it will obviously need to be put back on. Time will tell.
Also I got a haircut today.
