Weaning Back Down Again

Joey was weaned back down to 5 liters of vapotherm as of yesterday.  He stayed on 6 for about 3 days and by the third day, he was requiring less oxygen and performing fabulously. Between the 2nd and 3rd day, it literally was like night and day. I think he needs extra time to adjust to different settings and change. He was bumped down to 5 in the afternoon, and slept most of the day, but was very alert around 5 until about 10 PM playing with Ms. Kristen. She read books to him and held him for a while.  He was pretty happy for most of the day. I'm always grateful for these moments of cheerfulness for this little guy, because he can get cranky.

Scarlett, his primary nurse, suggested also that one of Joey's cranky checklist is making sure that the room is cool.  He can get hot and sweaty pretty quickly, which understandably can make a baby uncomfortable.  Maybe he was more pleasant today because we kept his room temperature at about 70.  He was also given his blood pressure meds 2-3 times today, since he did exhibit higher blood pressure throughout the day. Who knows, maybe this helped him out a little today too?

I have been doing my homeowner on alternative measures for Joey's respiratory support and am learning quite a bit.  Dr. Morris said that she would try to reach out to pulmonary on Monday to see if we can start having some conversations about ways to offer Joey more support, or to at least be more creative than the traditional norm.  As someone once said, complex kids need creativity or else we will be in the hospital forever.