November 16, 2023

Today was our first day in the new unit, and I think it went fairly well. It’s a lot quieter up here, and we don’t have much reason to leave his room anymore since everything we need is here. The nurses are trying to keep us involved in his care as much as possible, which we’re really enjoying. It is nice to feel useful in his care. We’re learning how to pick him up and with less and less tubes and wires, we’re starting to be able to pick him up unassisted. 

Neurology stopped by today with the MRI results, which they said was good news. There were no new updates from when we saw them this past weekend, so there are no new areas of concern. The images they received were just better and they were able to get more slices to build a more complete picture of his brain. We won’t see them again for a while, but that was a relief to not have anything else. 

Speech stopped by three times today, and all 3 times David decided it was a perfect time to fall back to sleep. He’s a little stinker. He’d be all awake with his eyes open, and we would just mention calling speech back and he’d immediately close his eyes and give a little smirk. The last time OT was in waking him and moving him around so he called speech to let her know that David was nice and awake. Of course once she arrived, David went straight back to sleep. 

He once again slept most of the day. It sounds like he’s still getting some medication to keep him comfortable, and maybe it’s making him too comfortable that he’s very sleepy. They may look at weaning some of it more. 

Other updates, David was supposed to work on weaning his high-flow air support. When Adam wanted to hold him, they decided to let him have a break of the air and just let him breathe by himself. David did such a good job of keeping his oxygen saturation levels where they needed to be, that they removed the nasal cannula afterwards. It is still near his bed on standby in case he needs it, but he’s been rocking it so far. 

They also put in an order to get a consultation from the pulmonary team to see what they think about his lungs and if they would recommend any further treatment or imaging. So far David has shocked everyone with his set of pipes considering his nutmeg lung diagnosis. He was diagnosed with that at 31 weeks gestation after a fetal MRI. This was one of the most heartbreaking days for us when we were told that his life expectancy was at most 5 months. So far though, he hasn’t shown many symptoms of it and has exceeded everyone’s expectations so far, so we are very curious as to what the pulmonary team will say and recommend for him. 

David also played Bingo today for the first time. They have a game every Thursday, and we finally had a more calm Thursday. Turns out David is pretty good at Bingo and had a winning card on 3/4 of the games played (it helps that there are 5 winners per game). He got a toy sloth as his prize. 

Mr. David also managed to dislodge his NG tube AGAIN. He’s getting pretty good at freeing himself of that tube now as this is the second time. However, since he’s now breathing room air, it wasn’t necessary to put it back in to relieve pressure in his stomach. He’s looking like a new kid now with no nasal cannula and no NG tube. All that’s left is the NJ tube now.