Saturday Night - A Josiah Update

Hi All

Josiah had a better day: more interaction, less crying and overall just more pleasant. He was able to go off CPAP a couple times just for a few minutes as we walked him around the room for a bit. That was so nice to be able to do that again.

He did a couple of weird things today that we're not sure how to respond to. First, when he was crying it looked like his heart skipped a couple of beats. Sure, it's normal for every to have their heartrate drop when they are crying or whatever, but it was something we never noticed before and we have watched Josiah's monitor A LOT over the last 7 months. And later in the evening, we think he had a seizure but the scary thing was that his heartrate stayed in the 60's for 30 seconds. Very unusual because Josiah usually bumps up on his own. We're pretty sure it was a seizure because it was all over really quick and he didn't want to stay awake afterwards.

So obviously this has us really unsettled and concerned, especially the night before we want to leave for a day. Weekends are SO HARD around here in the TCU. We usually get stuck with ICU nurses who don't know Josiah, and we have to listen to their cliche-talk and 'there there' stuff as they downplay our concerns even though we are the experts in Josiah's care. GRRR!

We probably won't have a nurse we know for Josiah tomorrow during the day - please pray that he/she is a good one and that we can have peace in leaving for a while. Pray that Josiah is OK during this all! Also, pray that our primary nurse is on in the evening (she is scheduled, but because she is part-time she is often also the first asked to not come in if there is too much staff).

Thanks.
- Andrew, Marie & Josiah