June 12, 2024

David was kind of sleepy today. His day started off with an echo. He mostly slept through it until the probe was near his neck but this is always his least favorite part. Remarkably, he didn’t scream his way through it, but just kind of wiggled. He responds very well to holding hands, so we did that for the final bit and then David went right back to sleep. 

He then slept until 10, and was pretty happy. I had a meeting coming up, and knew the wagon always provides him great comfort, so he got out of bed to sit in the wagon. That way if he did get a little fussy, we could always rock back and forth to soothe. Shortly after 11, PT and OT showed up and wondered if David would be up for some therapy. So, he got out of the wagon and down to the floor mat with them. They wondered if he was due for a nap, since he started to fall asleep on them. After pulling off his helmet, he seemed to perk up a bit since he no longer had to work as hard and finished out his session awake. By this point, he was tired, so he went back into his crib and fell straight to sleep. 

This morning in rounds, we had discussed switching his clonidine patch out for oral clonidine again. This is because they noticed his patch has been leaving red marks – likely contact dermatitis. I was starting to wonder if his sleepiness was due to maybe having twice as much if he got some oral clonidine plus still having the patch. David was probably out for an hour and a half, when his nurse really wanted to get that patch removed, but when we went to do it – it was gone. It’s still a mystery as to what happened to that patch since it was adhered by itself, and with a tagaderm adhesive as well. 

At this point David had awoken, and was quite happy. Soon his volunteer friend walked by and wondered if David would be interested in hanging out with him. Of course! We got David settled into his arms in the chair and those two read stories, sang some songs, talked about life, and David fell asleep. The way the volunteer speaks to David, always reminds me of Mr. Rogers. He’s just a great asset to David’s team. They hung out for quite a while – over an hour, likely an hour and a half. 

When Eli and Anna arrived this afternoon, they immediately got to work on the legos that they were going to do over the weekend, since I finally remembered to bring the missing pieces. Anna had finished her piece when David’s music therapist arrived. David played the shakers and really enjoyed playing her ukulele, while Anna joined in and played hers (we call it a guitar) as well. Anna played a couple other instruments as well. Meanwhile, Eli was still working on his lego train car. After music therapy ended, it was time for dinner. 

We tried to eat all together as a family – Anna in one high chair, David in the other, and Eli nearby. Like many plans, it quickly fell apart. Anna and Eli were apparently very hungry and quickly ate their food and wanted seconds before David was even set up in his seat. Once David was finally situated without any food yet, he started having some spit up and gagginess. Rather than have him continue that, I decided to put him back into bed, and now is when the orthotics guy appeared to do helmet adjustments. Why wouldn’t he come around 5PM? We got David back into bed, and he did his measurements. All is well, until David needs an adjustment again or when he’s back in a couple weeks.

Eli has been talking all day about the “adventure” he has planned, where we go back to the “rock the cradle” event, but this time I get to go with them. he really wanted to do that “adventure” today. Instead, we got to do mommy’s idea and go and make some s’mores at church. It has been since before David was born that we were able to physically be at church, and this was an event that would fit more easily in our calendars between hospital time and bedtime. So, off we went. It was nice to be back at church and see a few familiar faces and some new ones as well. They kids got to play their instruments with Pastor Dale as they sang some songs around the fire before making some s’mores. Eli reminded me that was his first s’more this year. Afterwards, Pastor Carrie read them some stories about seeds and they got some seeds to bring home. Eli also burned some energy by taking his scooter around the parking lot.

Meanwhile, David and Adam were hanging out. David got down on the floor mat and was pretty happy about it. Later he did his nightly novel to read more Harry Potter. So after I got sleepy David all day, Adam got awake and active David this evening.

As for his respiratory support and fluid levels – David likes to throw curve balls. After starting the night last night at 65% oxygen, by morning, he was down to 25% (room air is 21%). They were able to further wean that to room air today, where he seemed to hang out most of the day. And then he desated doing absolutely nothing – his transplant nurse was back for a quick visit to see how he was doing since she last saw him in the morning. So his oxygen support was increased again. He recovered fairly quickly this time, and I think within a half hour, he was back down. No one quite knows what’s up with his games. 

Also David’s diuretics are a mystery as well. He’s receiving quite a bit, and there’s really not much more he could receive. At this point, they are trying to determine if he responds better to one over another (he currently is on 3 different ones). He used to respond nicely to metolazone, but I’m not quite sure anymore. After not getting a lot of output today, they did increase his diuril. He was quite fluid positive yesterday as well. However, David’s provider gave him a gold star since he was the only kid on the unit who was wearing pink with her for wear pink day. In all fairness to the other patients, I don’t know that she told them, but she did ask David yesterday if he was going to wear pink with her today.