March 14, 2024

Happy Superhero Day (FKA Pi Day)! We would like to introduce you to Captain Chameleon! His super power is hearing thoughts. We used to think he was just listening to the plans of the day and then telling everyone that was not actually the plan and reminding us that he’s in charge. However, we have been very careful to not discuss plans in front of him anymore, and yet he still throws a wrench into the plan as if he knew what the original plan was. One doctor complained to him that he made her a liar right after she presented on him in conference. Other powers David seems to possess are holding his breath and in return changing a rainbow of colors. Oh David! 

Today was a nice calm day, and a huge winning day. I think David would have enjoyed Superhero day more if he could leave his room (and wasn’t sedated), but we’ll be here a bunch in the future, so maybe he’ll be able to celebrate super hero day in future years. Once again, David was a Bingo winner – and today he had the very first Bingo. Before and after Bingo, they announced that there was a drawing for a grand prize that we could enter David into, and would you believe it, David won that too! So, he’s now the proud new owner of a Ninja Turtle action figure and a Kid’s Kindle Fire. We don’t really do tablets at our house, but maybe David would like it for Trivia on Tuesdays, or for all of his future hospital stays. Especially when it’s time for his Fontan. 

Today, they slightly adjusted a couple things. His nurse practitioner has PTSD from the other night, and adjusting things makes her nervous as it seems no matter how stable David appears, he will do something unexpected. David does that to everyone. They reduced his favorite sedation medication (versed), and you could tell he felt that. When awake, he had quite a few more furrowed brows. However, he also seemed to handle it fairly well. As much as it seemed he was disturbed, he didn’t need many PRNs of it to be comfortable. They also went down a little more on his peep on his vent setting. So far, he’s done really well with his pressure support trials and seems to last the full 4 hours. There’s not much more they can reduce on his vent; however, no one will want to extubate him unless he loses some of the fluid his body has retained. Due to his extremely critical state, they want him to be in a perfect spot before extubation because he needs things to be perfect if he’s going to succeed off the vent. They have maxed out his diuretic, and still he doesn’t pee out as much as they would like. His kidneys look great, so it’s a puzzling phenomenon on how to get that fluid off of him. I think David must fear losing it because he wants to prove he gained weight so he can go home. He must not realize he had a major heart surgery between being admitted to gain some weight and now. We had some stream sounds playing for him when I left today hoping that might help him lose some fluids. 

David also had a new to him nurse today (something that is hard to achieve). Actually, David has had a lot of continuity between the nurses who care for him, which has been super nice. This helps us know that his nurses really know him and all his quirks and what works best for him (especially when what works for him is rarely what works best for the majority of the population). The nurse who has had David more than any other nurse is off for two weeks now, and she has hope that he will be out of the ICU by the time she returns. We’ll see about that. There are three different groups of nurses, so tomorrow the next group will rotate on, and we should have a familiar nurse yet again. 

Otherwise, this afternoon David got a visit from some super pups – Chase and Skye (aka Eli and Anna). We were so lucky to meet up with Fern before she went home for the day. The 3 super pups were adorable together! They also got some balloons because they are lucky kids. Maddie and Linus also got in on Superhero Day. 

As for tomorrow, we’re going to work on continuing to try to get fluid off of David and continue his pressure support trials to exercise his lungs. I think David’s highlight though will be to enjoy the Eras Tour now that it’s out on Disney. He’s a Swifty and she always helped him feel better prior to this admission, so maybe she’ll really help him along tomorrow.