They weaned David’s ventilator setting today, and he was able to stay on the RAM cannula with it. He’s still on BiPAP, there was some discussion as to whether he is ready for CPAP, but ultimately, David likes slow movements, so BiPAP it is. He’ll go back onto SCUBA tonight at that lower setting as well.
Once again, it’s a balance trying to get less fluids into him so he can reach his goal of being fluid negative. Switching some of his IVs to the feeding tube again. The IV meds just are nice because you don’t need to wait for absorption for it to take effect. Pharmacy is running out of one of his IV withdrawal meds, which he gets if they want fast relief but he has the same med he takes orally, so cutting that IV one was easy.
We had a couple chats with different specialists today. First we chatted with the cardiologist who is on staff this week. We had questions about what their long-term plans are for David – especially since we are almost 2 months out from surgery and progress has been slow, and also because he has left upper pulmonary vein stenosis and moderate tricuspid valve regurgitation. Essentially, they do not know which pathway David will follow yet. They would still like to get fluid off of him, while also having him in a good spot with his medications to get a really good echo to see what’s happening in those circumstances. Currently, he may still be able to follow along on the single-ventricle pathway and work up toward the Glenn, or he may end up on the transplant list. So, we will still wait and see which way David ends up going.
I also had a chat with one of the neurologists this afternoon about David’s seizure medications. After his surgery, and his cardiac arrests, at one point there was some blood pooled in his head that was irritating to his brain which caused some seizures. The thought is that as the blood clears up, his seizure activity should as well. So here we are several weeks out, and the pooled blood has hopefully resolved by now. She decided we’ll wean one of his meds (keppra) which he currently receives 3 times a day. Over the next three weeks, it will be weaned until it is gone. After that, he’ll have two weeks with just the other med (vimpat), and then she’ll come up with a wean plan for that one. Keppra can cause fussiness in babies, and also make them more drowsy, so it will be interesting to see if David is happier and awake a little more.
David also got some snuggles with our great volunteer this afternoon, and then with Daddy. David’s favorite thing with cuddles is to rub his head back and forth until he gets his nasal cannula out of his nose. If he’s ever fussy, and then not fussy, he has usually succeeded in his mission. He also had a combined session with OT and music therapy today. He really does seem to like those exercises and play time, even though he won’t let anyone know. After dinner, Eli and Anna played with a new art mat that David won from trivia yesterday. They seemed to enjoy it, and it just uses water so easy cleanup too.
Sounds like you had some really good conversations today, all the while realizing that David may request a different procedure that is more acceptable to him. He certainly is determined in figuring out more creative ways to get that cannula out. Can’t say I blame him! I’m sure he appreciated not having the scuba stuck on his cute little face. I’m certain that he’s been told how adorable he is by countless people and he wants to make sure that everyone gets to see as much as they can of him as often as possible. I so enjoy hearing of his little adventures 👍🏻
So glad to hear Adam got some good cuddles in today 💕