May 25, 2024

As David’s provider summarized it today, the plan for the day was no changes. Although, that wasn’t exactly right. She compromised with the doctor apparently about his diuretics and they went up on it, but just slightly. David is still very much fluid overloaded, and his lungs are feeling it. They have him on oxygen, but I honestly am not sure how much it is helping since the cannula has trouble sitting in his nose due to that bridle. Today I noticed that when he was sleeping, his saturations were in the mid-upper 80s, but when he woke up he was immediately desating down to the 60s. This went on all day long; however, by evening Adam said he was now desating while sleeping. He’ll receive an IV diuretic tonight, which they were hoping to avoid, but David has tied their hands. The only other thing of note, is that although the dietician would like to start fortifying his feeds, they are going to keep him unfortified through the weekend. I wonder if they are just trying to give him a good week of being on unfortified feeds and aspirin and seeing if the bloody stool returns before adding the fortification back in. 

Otherwise, it was a divide and conquer type day. There’s a lot that we want to accomplish at home, but we also want to be at the hospital with David. With the rain in the forecast, Adam came home this morning to get the lawn mowed, and I was going to try to get some plants in the garden and some meals made for the week. Apparently, the garden is overgrown with grass and weeds and I quickly realized it was going to take more time to clear it than I had planned for, so I gave up on that task and threw a tarp down hoping to kill the plants over the next week or so. Later Eli and Adam did get it cleared out fairly well.

Eli wanted to stay home, so I went to the hospital with Anna. Yesterday, OT brought a new high chair for David which they thought he might fit in better – Anna has claimed that chair as her own. After chatting with his provider, she said that she was hoping for David to get up and out of bed since that would help his lungs, I asked Anna how she wanted to play with David. She said she wanted David to sit in the other chair next to her, so that’s what we did. We played with him in the chair, before transitioning to story time. Eventually though, David fell asleep on us, so I put him back into bed. 

He took a good nap (Anna did not), and when he awoke, he started to desat again. Anna and I took him down to the floor mat this time. I brought one of our home gyms to his room the other day, and finally set it up for him. David didn’t really like the gym that much, although he held on to toys that were placed in his hands, and then we worked on rolling and tummy time. He hated the whole ordeal. He was finally calming with a tight hug, when he was saved by RT (respiratory therapy). He got to go back into bed to receive his treatment, but then he still was not settling, so he got set into the wagon. With all the desating he did today, I did not feel comfortable going on a wagon ride, but David always enjoys the wagon. He continued to desat until he fell asleep in the wagon. 

Eli and Adam arrived while we were on the play mat. Anna was quite excited because she had been waiting for them so she could go to the playground. Eli stayed in the room with David and I. Once Anna was done outside, all of them went to the End Zone until it closed. 

Otherwise, this evening, David’s got some cuddles in with Adam. He’ll get an x-ray in the morning to check on his lungs. Hopefully they look good and that David is having a better time so he can explore in his wagon tomorrow.