May 16, 2024

Today was a relatively uneventful day for David. When I arrived, I found out that David and I had the same sense of fashion today as we were both wearing our Buffs gear. He was apparently happy early this morning, but by the time I arrived, had returned to his “normal” level of fussiness. We had another new to us nurse, and she was excellent and made things fun for both David and the other kids. It was day 3 of transplant lab draws. We’ve been calling whoever does the draw “Dracula”, and today our nurse really leaned into that name. She grabbed a PPE robe and put it on backwards to make a cape before doing the draw. Tomorrow should be the last day of draws for the transplant labs, and the smallest amount. So far David’s hemoglobin has held on and he’s still saturating well. If it drops, then he does have blood saved for him in the blood bank in case he needs a transfusion. 

David had his first full day with his new helmet today. Sometimes he seems to hate it, and other times he seems to be upset about something else. Today it was just 1 hour on followed by 1 hour off. We tried to have good experiences with his helmet by doing wagon rides or getting cuddles with it on. He got cuddles today by our hospital volunteer, his nurse, his nurse from yesterday who has been with him through a lot, and myself. David also got some playtime in with the hospital volunteer and music therapy. 

At one point this afternoon, the care coordinator from the transplant team stopped by with another nurse who is on the transplant team. This new nurse also works in the cath lab, so she knows David from that, and said she will be there during rounds. They had a little powerpoint to go through and just kind of talk through everything they did yesterday again because things make more sense the more times you hear it. As we know, a transplant is not going to fix everything – it just takes one set of problems and exchanges them for another set of problems. She had a good saying today, saying it takes an acute illness and changes it into a chronic illness. The first year post-transplant is very tenuous with lots of medications and appointments as we do everything to make sure his body does not reject the new heart since that heart is a gift that is not taken lightly. 

This evening, as a family, we escorted David on his wagon ride. Yesterday’s wagon ride was less than ideal, so I made the decision that we will not bring our wagon up for it anymore. Instead, we brought Anna’s doll stroller and I knew about a lawn mower in the toy closet that Eli could use. Well, the last time we used the mower to entertain Eli was back in February when David had coded and was being revived and hooked up to ECMO. I clearly did not remember it very well, because that mower is super loud! Pop, Pop, Pop through the hallway 😬. Eli tried to go slow, hold up the back wheels, tilt it back so it used no wheels, and even just carried it to reduce the noise. Whoops! I’ll have to find something different for him tomorrow. However, it worked a little better to have everyone walking – as long as no one tried to run too much forward and remembered to watch where they were going. 

After the wagon ride, it was time for a routine lab draw. Eli had not seen this before and wondered what his nurse was doing. She explained, and then asked him if he wanted to help send the labs. That was pretty cool – he went with her down the hall to the tube drop. Usually the labs get picked up quickly from the tube drop, but today they ended up waiting four and a half minutes to get those labs sent. I remember early on being told the nurses are there to support our whole family, not just David, so it was pretty cool getting Eli involved in this new process. 

David also seemed to enjoy watching Bluey today. When he would get fussy, if that was turned on, he seemed to calm down. He got an ultrasound today, which he hated! This was just to check on his right arm that did not have clots in it, just because that was the only limb not checked recently. After ultrasound, he played Bingo and then hung out with the volunteer who sang to him until he feel asleep. I returned from my meeting with the transplant folks to see David sitting on his mat doing music therapy and then getting cuddles in with his nurses. This evening, David is watching the Timberwolves with Daddy. He does not like it when they lose, so hopefully they can turn it around (I’ve been informed now that they did win). Adam pointed out that David’s helmet is the Wolves colors. Tonight, David gets to remove his helmet to sleep, so I hope he enjoys that.