May 17, 2024

t’s hard to say how David is doing – he still fusses quite a bit when he’s not moving around in his wagon. However, it’s hard to know if he’s uncomfortable about something or just expressing his dislike for his helmet. He seemed to enjoy his mama roo this morning. After enjoying those swings for a bit, OT and PT arrived for a combined session. He did not enjoy his tummy time, but had improved head control that made them so proud. He also showed them how he can attempt to stand and push up when in that position. That made them happy because sometimes kids do not react to that pressure, which makes learning to stand even more difficult. 

Since his bloody stools have continued despite being off feeds and having a pause on aspirin and lovenox. The GI doctors were asked to come do a formal consult – especially since he’ll need that for his transplant evaluation. Ideally, they would like to use an endoscope to check out everything on his insides, but that is an extremely risky procedure for him so they will not do that. Especially since he’s not bleeding so much that he’s requiring blood transfusions. Essentially, they believe his bloody stools is due to low perfusion to his gut, and the way to solve this would be to get him a transplant. So, this blood will not stop their team from thinking he should move forward with a transplant, and in fact that is the solution to the problem. They did ask for two x-rays though, just to check for pneumatosis, so David did get those this afternoon to check as well. 

We met with one of the nurses from PACCT to try to see if we could find a cause or solution to David’s fussiness. The goal is to not cause him to fall asleep, but to be awake and comfortable. Earlier in the week it seemed like the valium worked, but not as much as the week as gone on. So, they will increase that dosage slightly, and also look at changing the times it’s administered. 

We tried lots of ways to entertain David again – dance parties, playing with toys, cuddles, mama roo, and wagon rides. The one that works the best is his wagon ride. This evening, after everyone arrived, he went on quite an excursion in his wagon. The first step was going outside. Eli pushed his Skye and Marshall stuffies in a stroller, and Anna pushed her baby in a Target shopping cart. The first stop was the playground – Eli and Anna ran around at the playground for a bit, while David just enjoyed the warmth, shade, and a breeze. After this, we went for one loop on the walk outside, before heading to the Endzone. Apparently, it was closed this afternoon, so we went back upstairs and David joined us for dinner in the lounge. It was the first time we were all sitting relatively close together for dinner in a long time. After this we did another lap on the unit. Overall, it was a great afternoon of family fun. After we left, David’s nurse got in a good cuddle time with him.

Otherwise, David’s milrinone was increased since his other blood pressure medications were stopped, and his blood pressure was starting to trend high. He’s back to the dosage he was on, prior to starting those other meds. David’s final labs for transplant evaluation were also completed today. Now it’s the game of waiting for them to all come back and for the team to review everything to determine whether transplant is in David’s best interest. Then if it is, based on his labs they will determine how difficult will it be to find a match. I believe most of the tests should be back by early next week, and then they will have a larger discussion. For now, we’ll just try to keep him comfortable and happy.