As hoped, the EEG came off and the NG tube came out this morning. After a quick scrub to get EEG gunk out of his hair (head mayo, as I call it), Rowan was a very handsome, happy camper. The rest of the day was just kind of an observation day to make sure he […]
A fairly quiet day in the pediatric ward. The EEG remains on for some continued testing overnight tonight, but there were no major seizures since it’s been on this round. In fact, neurology is pretty convinced that even some of the mild subclinical ones they’ve noticed have just been the sensors picking up back pats […]
The results of yesterdays MRI have come back and we got to see them compared against his first set. Rowan’s case is puzzling the neurology team. On one hand, the brain injury seems to be healing / scarring over quickly in the past three weeks, which suggests that the seizures may have been caused by […]
Today’s MRI went well by all accounts, and we finally got a chance to talk to genetics. They didn’t have a lot more to give us on the results of Rowan’s testing beyond what neurology shared with us on June 30, but they did get Amber and I set up with a blood test to […]
Rowan turns one month old today! Only one confirmed seizure today, so the new doses seem to be working pretty well for now. He gets his mix of meds via his NG tube, but as of today we’re also able to bottle feed him again. Between that and now also being able to do diaper […]
The full respiratory monitoring system was removed from Rowan’s room today. In its place, his team has added just a constant low-flow oxygen supply through his nose (seen below), plus an oxygen mask nearby for when he needs additional support during some seizures. Neurology came by this morning and shared that in a ~14 hour […]
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 […]
Rowan had another dozen or so probable seizures overnight last night, so neurology came by this morning to pop on the EEG again to try to catch one in action. However, the excitement from yesterday and the extra anti-seizure medication doses administered overnight meant that Rowan was asleep basically all day today, from around 8am […]
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 […]
Not a whole lot to report today. The genetics/neurology meeting never materialized, so we’re hoping that happens tomorrow instead. Rowan had a bunch of episodes of rapid desaturation all day long, about one per 1-2 hours if I had to guess. No one’s really sure why they’re happening, but they only last about 20 seconds […]