March 31, 2024

Happy Easter! Here’s a quick recap of the weekend:

Yesterday, March 30th:
Slight step back, which is not completely unexpected. Friday David was on RAM all day and SCUBA at night. They tried to do the same on Saturday, but David was a bit more agitated and had an increased work of breathing. He was eventually put back into SCUBA in the afternoon to help him. A X-ray taken around this time which showed his right upper lobe on his lung was once again collapsed. This helped explain the increase work. I was able to get a short cuddle time with David before he went back onto SCUBA, but most of the day was spent trying to comfort him as he was not liking a lot of things. 

After being off his diuretic for a couple days (except spot doses as needed), it was added in as a scheduled med. David’s heart and lungs would really like it if he had less fluid, although his kidneys are happy. Hopefully he can take off some fluid and keep them happy still. We’ll see. 

Eli and Anna had activities this morning – Anna gymnastics and Eli skating lessons. So, I met Adam at gymnastics and he got to spend the day with them. We are woefully behind at being prepared for Easter, so after a nap they dyed a couple eggs. Time got away from them, and they ended up staying home the whole day.

March 31st: 
We tried to make the most of this very strange Easter. Our house was visited by the Easter Bunny this morning. Searching for eggs kept Eli and Anna busy for a while (long enough to get breakfast cooked). We listened to church on our way down to see David and brought him his basket. Adam was getting in some snuggles when we arrived, and then I was able to get some. They said David was pretty grumpy this morning until after he was taken off of SCUBA. David had also spiked a fever. It was unknown if it was a fever from working himself up or an actual infection he’s fighting, so they sent a bunch of cultures to be watched. 

General surgery has agreed that David can start getting some feeds again. As we know with David, we need to take everything slowly, so today he received some food at the rate of 1 ml an hour. I believe his feeds were stopped 2 weeks ago, so hopefully his body is able to tolerate the feeds this time.

David’s chest x-ray looked slightly better this morning, but not perfect. Since David doesn’t always like his SCUBA, and to give his face a break, he gets a couple hour breaks back onto RAM throughout the day. I think it’s supposed to be 4 hours SCUBA then 2 hours of RAM, much like it was earlier in the week. I know he broke that a little bit for cuddle time, and when SCUBA was really making him upset this evening, they gave him his break a little early. They also changed his settings so that the BiPAP is giving him a little more support to try to hold open that lung better. 

As for his diuretics. His kidney numbers started to climb a bit, so they may end up backing down on the diuretic. This is unfortunate as he’s getting a little more puffy again and will cause more work for his lungs.

Eli and Anna were a bit restless at the hospital today. It turns out that Anna has the same sweet tooth as her great-grandpa and gobbles down all candy she can get her hands on (whether it’s from her basket or her brother’s). I ended up taking them both home after lunch – so I didn’t get to spend much time with David. However, I got time with them which I don’t often get outside of “hurry up and get ready for bed” or “hurry up and get ready to leave”. It was nice to not be in a constant state of rushing. They spent some time playing and eventually Eli took his bike out and Anna her scooter. Eli again expressed his desire to not go to the hospital anymore and we had a discussion about it and how he would feel if he was in the hospital and no one visited him. I’m not sure if we made any headway but he’s starting to learn more about David and why he’s there and what it means to be a family. In his mind, David is never coming back home and this is the new normal.