Today went better than the last couple days. David still had moments of fussiness, but most of the time he was consolable, he had more smiles, and was able to take some naps as well. He’s starting to feel better. In my non-expert opinion his discomfort is still related to something with his digestion and perhaps his NJ tube. His ultrasound yesterday did not show anything abnormal, which I was thinking would happen since he seemed more comfortable by the time they stopped by. Neither Adam nor I was able to make it to rounds today as we were doing the kid-parent shuffle to get Anna to her gymnastics class. I always like to be at rounds in person since it works the best – we tried calling-in once, but it was difficult to hear, and at that point we were passive observers who just liked to hear the plan for the day. Our nurse was able to summarize it for us, so calling in didn’t feel as important. Over the course of this stay though, we’ve seen David every day, while the various staff members roll on and off, so we’ve been able to provide the consistency and history that otherwise gets lost, so it was a little disappointing to not be there today. Anyway, they decided to try David on a new neuro medication that will help to calm his brain down in the hopes that will help his agitation. It takes over a day to take effect, so we shouldn’t see results immediately, but I do know David was much happier today, so whatever is bugging him has seemed to at least momentarily resolved itself.
David’s feeds were also advanced today. He’s slowly making his way back up to full feeds. He took his simethicone orally today, and seemed to enjoy it and remembered how to swallow. That was great news! We haven’t seen speech in a couple days, but maybe we can start working with them on those skills a bit more now. David also had another larger bloody stool today, so we’ll see what the team thinks of that. Otherwise, I think we’re just monitoring it at this point and continuing on.
David got a soap and water bath today, which he never seems to like. It’s basically a sponge bath – once he can sit in a tub again, I think he’ll enjoy it much more. We also made it a priority to get David out for his wagon ride today. He takes his wagon ride very seriously, but today he cracked some smiles for it! He took his little Fern for a walk today since real Fern has weekends off.
Eli, Anna, and Adam joined us this afternoon. After I grabbed a quick lunch, Anna decided to go to the Endzone where she did some painting and dancing. Eli chose to stay in the room with me. I was able to read to both of my boys before David fell asleep. Otherwise, Eli worked on some pattern building recognition, drawing, and working with the water canvas. I think David has his best day temperment-wise since Wednesday, and otherwise it was a good, day for the family.
Hallelujah 🙏🏻 Rejoicing in the good day for David👏🏻 It has to have been so great to get out for a wagon ride and to see him smile💙 A tubby is sooooo much better than a sponge bath! He will enjoy splashing around!
I do have some free time now and then, if you need any extra help with Anna, Eli or pooches…..
Good news that David is more comfortable and got to take a wagon ride again. So glad David’s feeling better. His smile in that wagon photo is so lovely to see… we can see how much he loved being out and about! You and Adam are so good at being advocates for David, caring for him and being there as much as you possibly can for those caregiver visits, too. With all the people he sees a week, who care for him, your record of being there for those transitions is pretty phenomenal! Praying that the mystery of his discomfort gets solved soon.
It appears you have a budding artist in Miss Anna! It is good news to hear that David is feeling more comfortable, praying this track continues.