March 21, 2024

David had a great day! He tolerated a sedation wean over night, and then again this morning. He was doing so well, that they weaned him again this afternoon and may wean it again this evening. He’s mostly happy when he’s awake and falls asleep calmly. 

His pneumatosis seems stable. They switched him from 2-view x-rays every 6 hours to once daily now. The x-rays really stressed David out. He’s used getting an x-ray daily that he just lays on his back for, but the second view causes him to be moved onto his side, which he’s not super fond of. We also learned that David will be NPO (no feeds) for 10 days with his antibiotics – this is day 2 of the 10 (technically 4, but the first two don’t count since they were before this diagnosis). I’m going to need to figure out how to donate some milk because we already have too much at home. 

The nurse practitioner said he met his fluid goal yesterday (as long as you don’t count his lipids – and no one counts lipids 😉). The pharmacist said it didn’t count since he wasn’t given the task until 10 hours into the day, so today David will definitely hit the goal (lipids included). David isn’t peeing as much today – he may have hit his limit on how much fluid he will give up, and that’s ok. He’s looking much more like himself now. 

OT visited David this morning. It was back with one of his regular OTs and he did very well. He let them work all his limbs and sit him up for a bit. It will be much easier to do that once he doesn’t have his breathing tube in. The current plan is to try to remove it again on Saturday. We’ll see how he does then. Music therapy also came by again this afternoon and she sang him some songs. She said he seemed to enjoy it and his oxygen saturations improved during it. 

David has been paced with his pacer since yesterday. His blood pressure was on the lower end yesterday, and the thought was to pace his heart rate at a rate faster than his normal rate to see if that would improve his blood pressure. I’m not sure when they want to try to stop pacing him again – maybe after extubation. So far he hasn’t had a desaturation episode while being paced.

Other things we learned about today – today is World Down’s syndrome Day so we were supposed to wear some fun socks. We didn’t know this so we missed out. Fern the facility dog came by for a visit, and she had her socks on. David got to watch Fern while playing Bingo as well. This was a very close game for us, and he didn’t get a Bingo until the final game. We thought this may just be his week to not get a Bingo, but he pulled through (it helps when they pull every card for the last game). 

There were some March Madness festivities as well. All the kids got a balloon, and we got some lunch. We have been blessed with a great winter when it comes to commuting to the hospital and back and I think our luck has run out. I’m hoping for a clear commute tomorrow morning, but it seems unlikely. With David not eating, there is no big rush to get to the hospital (except I don’t like missing rounds), so perhaps I’ll stay home until the roads are in better shape. Maybe it will stop snowing in the early hours and the roads will be clear for the morning commute – that is my hope.