November 10, 2023

David had a really good day today. The good days are less draining that the tough days. Overnight, they were able to find the right balance of medications to bring his blood pressure down and allow him to find some comfort. He was resting nicely when I arrived this morning and his last few labs came back great. His nurse said that he was weaned off of one blood pressure medication, and he had one more that he was hoping to be weaned off of soon. 

His labs continued to be great today so his feeds were finally able to resume. He’s back down to a smaller dosage again and will slowly work his way back up. OT came by and got him all stretched out, and he got his chest tube removed today. The chest tube was for drainage after his surgery last week. I believe it was kept in for a longer time than most due to his nutmeg lung and the extra fluids his body produces as a result of it. Fern, the support dog, came into his room to support him during the tube removal. It was pretty funny, she came in with some royal treatment – being pulled on her bed so she didn’t have to get up! 

David was also able to have his MRI today. It sounds like he may have another one next week, but his head looked good. OT came by and got him all stretched out. He also had his first taste of milk on his nuk. He really seems to like his new bear nuk and rejects his other normal nuk. 

We also go some good snuggle time in today – first with mommy, then with daddy, then mommy again. As he has less and less accouterments attached to him, it’s getting easier and easier to get him moved. We only needed 1 nurse this time, where in the past we needed 2-3. At the end of our snuggle time, speech therapy came by to check him out. We explained our hopes for his feeds in the future, and we’ll work toward them when he’s ready. He would not take the nuk from the speech therapist, and needed mommy to hold it before he would show her how good he’s gotten at sucking. Right now, we’re going to continue working on making good experiences with the. pacifier and mouth touches. He’s not ready for oral feeds at the moment – he needs to get rid of his GI tube and have less air support before that can happen. 

Goals for this weekend include: slowly transitioning some of his IV medications to medications that can be given  via his feeding tube, slowly weaning off the air support he’s getting, and slowly increasing his feeds. Slow and steady progress is what we like and we’re hoping for a nice calm weekend.