May 23, 2024

David’s day started off where yesterday left off, but by afternoon he was doing much better. He is super fluid overloaded after his blood yesterday, so today was mostly trying to get some of the fluid off of him. His kidneys are loving the fluid though (his lungs not so much). He was a little fussy after waking up, and Adam turned on some Taylor Swift and David immediately calmed and fell asleep. While he was sleeping, his godmother Fern had a gift sent over for him – a fairy godmother wand for Taylor. When he awoke, he was a bit gaggy and still not feeling great. He enjoyed the Goldfish song for a bit before settling in again for another nap and then waking up in time to play Bingo. Since he was awake, he was forced to hold the pen and cross things off. Eventually, he transitioned from his bed to his high chair for this task. He really seemed to enjoy that new view.

After Bingo ended, he played with toys in his high chair, and we switched the channel, where we found Mickey Mouse. It turns out, David LOVES Mickey Mouse. At this point, his volunteer friend came in to play with him, and David absolutely loved playing with him today. He was full of smiles and his attempts at giggles. It was nice to see happy David return. It came to an end when he needed a blood pressure, and so David took one more nap. When he awoke this time, it was time for some wagon fun! 

We took the wagon first down the hall to see his fun nurse who had to float today – the one who finds so many ways to entertain him from dance parties, to art projects, toys/activities, etc. Well, when she saw us coming, she went to the cart that has different “distraction” toys, and found some party noise makers for Eli and Anna. As we’re walking down the halls with the celebratory sounds now sounding, I think we realized that was a mistake. Oh well – they were having fun until they got too moist and broke and needed to be repaired with some tape. After doing our lap on the unit, it was time to take David outside. We did one lap out there and found another leaf for David to explore. Since it was starting to get late and close to time to bringing the older kids home, we only did one lap before heading back up to the room. 

David started to desat once we returned, which was a little odd since he always sats higher in his. wagon. Maybe he understood that he was needing to leave the wagon and didn’t want it to end. He ended up on some oxygen and back in his high chair where we found Mickey Mouse again.  He was content. Tonight, he’s still requiring some oxygen – although, I’m not sure how much of it he’s getting since the cannula doesn’t fit in his nose well with his bridle. however, this is the longest he’s been on pure oxygen and not the blender, which makes me a little nervous. I guess I don’t understand what is safe vs not safe for him when it comes to his respiratory needs.

As for the transplant process – the team is still waiting on the results on one of the tests. This test has been taking up to two weeks to get a result back, and it would say whether David is currently A/B compatible. This would allow him to receive a heart from a blood type that is different than his own, which if he ends up being a transplant candidate, would greatly expand his pool of eligible donors. I think that the results may have arrived this afternoon, but I’m not sure. He also needed another test redrawn today. Apparently, the test tube needs a lot of specific information written on it, and if any piece is missing, they will just discard the test. The hope is that all the information will be available next week for the large committee to meet and discuss whether a transplant is something that would benefit David and increase his quality of life. 

One thought on “May 23, 2024

  1. Always so much going on! It is wonderful seeing the siblings playing together. My prayers continue for good days … and for knowledge and discernment for those working to make decisions around David’s care.

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