April 20, 2024

Well, today was a day of steps forward while simultaneously taking steps backward. So, maybe we didn’t end up anywhere – it’s hard to say. His respiratory support was weaned slightly – they moved his high flow from 6 liters to 4 liters. His nurse said that’s pretty much the last step to not having any support. When I arrived, his ventilator had been removed from his room – he’s really breathing on his own now! When the respiratory therapist came in to give him his nebs, he was so amazed at how far David has come since he hasn’t seen David in a couple weeks. He was wondering if David was the nutmeg lung kid that he thought he was and wondered how that was going and was so happy to hear David ended up not having it. He then remembered the day David needed to go to CT when he was on ECMO, and had his ventilator and nitric, and all his pumps because that was a huge undertaking to get all his equipment moved. He stated they don’t often move kids on ECMO. I was just amazed how much he remembered about David – I guess David has really been unique and impressionable. 

David’s big step back today was this morning, and throughout the day since, David’s bloody stools have returned. No one has a reason for why this keeps happening. This time, David was only on 3 ml / hr of unfortified feeds. So, once again David’s feeds are being stopped for at least 24 hours. He got an x-ray which did not show anything. They will draw a verify-now lab in the morning with his other labs. This will show whether he is therapeutic on his aspirin. If he is, then there will be more questions about why this keeps happening. Without starting feeds, David cannot move to captopril. Maybe David doesn’t want to leave the unit. 

We did inquire about a helmet for him today. The helmet department is closed on weekends, so he has an order for them to come visit him on Monday for a consult. We’ll see how that goes. 

As for the rest of David’s day – he seemed like a typical baby: awake, play, nap, repeat. I had him sitting up in bed playing with toys and singing songs. At one point I hadn’t realized his sump wasn’t clipped to the bed, and it had fallen off the bed and the gravity of it pulled it to the ground. So David needed a new NG placed. Otherwise, we had a lot of playtime today, and read a lot of stories. This afternoon, we were in a Billy Joel mood, so David worked on playing his piano while listening to The Piano Man. OT came by and David did really well – even gave some smiles when it was over. Speech also stopped by to work on regulation more than anything – David’s learning to regulate himself when he receives touches near his mouth and face. They are really working on all of those touches being a positive experience. 

Eli and Anna spent most of the day away at their activities – Anna’s gymnastics and Eli’s skating lessons. This was the last of Eli’s skating lessons for a while since all the next classes are already full. After having lunch at “The French Fry Store” they took a quick nap before hitting up the library for a bit. Eventually, they came to the hospital for a quick dinner and hellos for David.