June 9, 2024

Another good day for the Tilly kids. David’s fun activities included going down to his floor mat where he had tummy time, worked on the sit and standing position, and then just playtime. When he got sleepy, he went back up into bed. This afternoon, Bluey got turned on, and he started wiggling around with excitement, before he left his bed and sat in his wagon. It didn’t leave his room, but he didn’t seem to mind. Well, he got a big smile at first, so maybe he would have preferred if it actually left the room, but he seemed to enjoy sitting in it too. We looked at his photo books to see pictures of his family, some of his nurses, and of course Fern. He ended his day with the evening story time and then the nightly novel. 

He had a few changes today – his amino acids were increased to his goal amount. So far I have not noticed an increase in spitting up like we had last week, which is great. He also got a single dose of metolazone to see if that will help him get some fluid off, and thereby, helping his lungs. We haven’t seen much improvement in being able to wean his respiratory support lately. Tomorrow morning he’ll get a chest x-ray just to see how his lungs look. 

I brought the kids down this morning, before things had really opened up. So, they played with some magnatiles in the room for a bit. They were going to do some legos, but I didn’t read the instructions prior to packing the bags, and apparently left some parts at home. I guess that’s something to build another time then. After they bored of playing with those things, they went down to the “sand” park for the rest of the morning. Upon returning, we had some lunch, and then we hoped they would take a nap. Of course, they were not calming down, and I started to look at social media while I rubbed their backs. It was here that I noticed David’s music therapist on the M Health Fairview Pediatrics page and found out there was an event happening near the Minneapolis Institute of Art. After some deliberation, Adam decided to bring them to the event. 

The event was called Rock the Cradle and was put on by The Current radio station where kids were able to explore art, music, health, and other things. Our kids were just there for the tail end, but still had a blast and did a lot of things. They danced around, had a car race, made their own shakers, created reporter badges, etc. This finally wore them out, that they fell asleep in the short ride back to the hospital, so I took them home. 

Within the goody bags, the kids found some bandages and syringes. The kind of syringes they use to give David medication through his NJ tube (or even his IV). This reminded me that we had those tube stuffed animals we were going to give them when David came home with a feeding tube. Since it seems very unlikely that David will be coming home anytime soon, I gave them their stuffed animals and showed them how to use the syringes to feed them or give them medication. Eli’s is apparently very sick, and needs lots of medicine, and he also needed to “take him for a walk around the unit”. Anna walks her by the tube as if it’s a leash. We had a discussion about how if that tube comes out, we’ll need to go to the hospital to get it put back in, and then they will need an xray to make sure it’s in the correct spot, so she should be more careful. Both of their stuffies also got a shot or two, and had to get a bandage. Finally, we read a book about the different ways people may get their nutrition. 

Overall, it was good weekend. We’ll see how the doctor tomorrow feels about David going upstairs. I’m not sure – it could go either way in my mind. He’s needed more respiratory support lately, but they say it is something that they can handle upstairs. I’m not really sure where the cutoff is though, if he keeps needing more. At what point do they say that’s too much, and back down he comes? Maybe the x-ray is the first step in figuring out what is the underlying cause.