November 19, 2023

Thankfully not much in terms of an update today. Eli, Anna, and I spent most of our day hanging out with David. Anna just dotes on David – she loves to caress his head and arm. She also lets us know when he’s crying “David’s crying” and said she wants to give him a hug when he was crying. She’s going to be a great big sister to him. 

Adam gave David a bottle this morning with speech present, and he drank most of it. Speech came back for his next feeding, which I gave him and he drank the entire bottle. After that, we were given permission to give him his bottle unsupervised every 3 hours. I could tell as the day wore on, he was getting more and more exhausted with drinking his bottle. Whatever he doesn’t finish, he receives via his NG tube. 

We unswaddled David for his feeding this morning, and then we just cuddled when he was done. At one point Anna asked to use the potty, and during the time of seeing if she was heading toward the bathroom, David pulled out his NJ tube. He really is an expert at pulling out these tubes if his hands are free. This is the first time he didn’t dislodge it due to needing more tape – this one was taped very well. Luckily, the doctors were meeting this morning and discussing that his NJ tube could be removed so David preemptively did it for them. 

David’s PICC line was also removed today. He had just finished eating when that happened, and he pretty much slept through that whole procedure. It is getting easier to move him from his crib to the chair now – he just has his NG tube, his pulse oximeter, and a bunch of leads for his heart rate. He may be able to wear more clothes too. The nurse also urged me to give David his injection this morning, and he had a lot more to say about that than his PICC line removal. 

Otherwise, the pulmonologist who checked out David with his CT scan stopped by, and reiterated the details that we heard from one of his cardiology doctors. His lungs are not perfect, but they do not have nutmeg lung that was feared. Since he’s not on oxygen, is alert, and has a lot of fight in him, she doesn’t want to do any further testing for him. The next test would be a biopsy of his lung. So, as long as he continues to breathe without oxygen, and doesn’t have fluid build up in his lungs she doesn’t see a reason to biopsy his lungs. In the future, if he is sedated for a procedure, then it may be something to do, but for now the plan is to sit and wait and see how he develops.