June 6, 2024

The transplant team met again this afternoon and this time had more data on David. Compared to last week’s meeting where we didn’t find out the decision until 3.25 hours later, this time we got the decision after a half hour. The entire team was in agreement – that David would benefit from a heart transplant. The next step is getting approval from insurance to list him, but it sounds like that is usually fairly quick. Insurance had approved him to be evaluated, but they need a separate approval for listing him. Based on the conversation, sometime tomorrow morning we’ll get a phone call saying that David is officially on the list. David will be listed as status 1A, which is the highest status. You can read more about the various statuses here. He’s able to be listed at this status since he’s in the hospital and on a high dose of milrinone. Being interstage may also play a role. 

Now, we’ll have to do everything that we can to keep David healthy. If at any point he gets sick, he’ll likely be moved to status 7 – inactive. This is because he will not be well enough to endure the transplant. Once he’s better, he can move back out of status 7. 

We have no clue how long the wait will be – it’s a double edged sword. Another family has to lose their child in order for David to get a new heart. We are very grateful to those who chose to give life in this way, but also mourn their loss. We will try to find a way to honor the memory of that child when the time comes. 

Due to David’s small size, it really narrows those who would be able to supply him with a heart. There are some things though that expand the pool size for him. For example, they can accept a heart from a child up to twice his size – but never a child who is smaller than him. David also currently does not have the blood type antigens, so he can accept a heart from any donor, regardless of their blood type. This is called ABO compatible. He will continued to be monitored to make sure he doesn’t build up those antigens in the meantime. There are other things that go into finding a suitable match, such as tissue typing and how long you have been waiting. We are not anticipating finding a match quickly. 

Otherwise, David had a fairly uneventful day. I don’t believe they really made any changes today. They are giving his animo acids another day before increasing those, and they didn’t touch anything else to make sure any changes do not mask another thing. David played Bingo this afternoon, and then had a music therapy session. He’s getting really good at shaking his shakers. We also briefly saw Fern before she was done working for the day. 

I took the kids to the End Zone today, and they played with some magnatiles and fish/fishing poles. They ended up building some aquariums for the fish. When we left there and headed back upstairs, I ran into one of my former coworkers from about 11 years ago in the elevator. I was hoping he was heading to the birthplace, but unfortunately he was heading to unit 6. We were only going up 1 level so we didn’t get to chat much before the doors opened, but maybe I’ll run into him again as I thought I saw him yesterday when we were leaving. Hopefully his child is doing all right. 

I was going to hold David briefly before we left, but instead Eli and Anna each wanted a turn holding David and listening to his heart. The other day, Eli said his heart sounds just like David’s. That’s pretty cool, but also a little alarming! A nurse who knows David well helped them find the good spots to hear things. 

There’s a nurse practitioner who has also been teaching the kids some new handshakes/fist bumps. It started with a respiratory therapist teaching them “squirrel!” and then a few days ago, the provider taught them “potato/french fry”. They were too shy to do it with her, but Anna especially does it non-stop with me – especially at mealtime. Well, today the provider and nurse taught them 3 new handshakes – snail, woodpecker, and turkey. Eli is happy to add these to his repertoire. The provider also taught them a couple more ways to say goodbye, in addition to see you later alligator, after awhile crocodile. We now know toodaloo kangaroo, and goodbye butterfly. I wonder what new fun things they will teach them next. 

It also sounds like David has the potential to go upstairs next week. The doctor on service this week made sure to close the door before voicing that, because last time he mentioned going upstairs next week, it was the beginning of April. So we’ve joked that if he says we’ll be upstairs next week, we probably will not go anywhere for another two months. The doctor wants David to stay through the weekend and hopefully continue to tolerate the feeds and protein and then the doctor next week can make the decision.