March 7, 2024

Not much of note for today. They are still weaning his ventilation support and have been mostly happy with his progress. They have been giving him some non-IV medications to help him wean off some of the IV sedation. However, David continues to get very upset whenever he starts to wake up. He holds his breath causing his oxygen levels plummet (and he starts to turn blue) and his heart rate plummets as well. They have stopped pacing him when this happens now as long as his blood pressure doesn’t decrease and then they wait for him to come back up. 

We played Mario Bingo today, and David was once again a winner. We love Thursdays for the Bingo mental break. It’s a great escape from everything else that is going on, and the hosts keep is fun and entertaining. They all wore Mario mustaches today – even Fern… well, Fern tried but she thought it was a treat. One of the hosts tried wearing Luigi’s green hat, but it got lost in the green screen. Another host moved his mustache to his eyebrows to look like one the characters. This week David picked out a Pikachu hooded towel to use after bath time when he can finally take baths again. 

After Bingo ended, I told David I needed to join a meeting but I would be back when it ended. Apparently that was a mistake. I had only sat down for about a minute, maybe two, when his room was filled with people again. I heard his nurse calling for help. Apparently, David decided he was upset that Bingo ended or he thought I left or who knows. Well, he dropped his oxygen levels to 27% and they needed to manually breathe for him and pumped up his oxygen to 100% while they waited for his numbers to come back up. When he does things like this, it always leaves me a little on-edge. He did get upset and desaturate one more time this afternoon, but not as drastically so his nurse was able to handle it by himself. 

His team is also talking about starting pressure trials with David’s ventilator. This means they will put it on very low settings and then David will do most of the work, and see how he does. This will be one of the next steps to make sure he can come off the ventilator. He will have several trials over the course of several days. There is some concern about his diaphragm and how that will handle coming off the vent – in particular, his left diaphragm. This is because they now know his left side has decreased function, but it is unknown if it will affect his diaphragm for breathing. 

We are now transitioning back to the first group of nurses who took care of David after his surgery. I guess it was 3 weeks yesterday. So tonight, one of our favorite night nurses is taking care of David. Adam said David woke up a little bit, but saw it was his buddy and did not get upset. He’ll also play David some good music overnight. Last night his nurse said she lifted him up when he was upset and he immediately calmed down. Perhaps he just wants to be held. Hopefully we’ll be able to do that soon – it’s just super difficult with everything that’s connected to him – he has his foley catheter, vacuum, two drainage bulbs (I think they look like grenades), his breathing tube, his NG and NJ tubes, his heart monitors, his pulse ox, his NIRS monitors, and all his IV lines on two IV poles and the pressure boards. It’s just a lot of stuff to move with him and not disturb any of it.  Every day we make a little progress.