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Liz Stokes

To Transplant town we go.

We never spoke with the Cardiologist or Surgeon but when the heart failure team (yep you read that right) walked in we knew what the day ahead of us was going to present. Lots of meetings. We weren’t disappointed.

Meeting one 7:30a introduction to the heart failure team.

Meeting two:7:45a introduction to the hematology team.

Meeting three Morning rounds

Meeting four CT scan- which meant a huge 45 minute long process of moving him out of a tiny bed to an adult bed because the portable CT scan machine would only work with the tiny bed.

Meeting five 2p Our meeting with the transplant aka heart failure team was about an hour long. They gave us all the information straight up. (I only like vodka straight up and by the end of the meeting I needed some.) There’s a lot of risks to Carter getting a transplant however there are more risks to Carter not getting a transplant. Simply said, we want him to have every chance at life. There’s a lot of uncertainty. For every one heart that becomes available there are about 18 people who die waiting for a heart. There’s no guarantee and they make this very clear. Once we get a heart (I’m being positive!) OK. Once we GET a heart, there’s a lot of danger afterwards of rejection. Every body no matter who you are goes through rejections. They’re putting a foreign object into his body. Carter’s body and blood will immediately start attacking that object. Luckily for Carter’s sake there are medicines that will help limit the effects of rejection. Medicines that are very time sensitive. In other words 12-14 medicines and we can’t miss or mess up a dose. (Lucky for Carter I’m type A and will obsess over getting it right.)

Next up: time. Carter will be in the hospital from now until he receives a heart. That can be days, months, or years. Then once he receives a heart and is able to be discharged, we’ll be discharged to the Ronald McDonald House for 3-6 months before being permitted to move home. We’ll have too many appointments every week and in case something should happen that’s not planned we’ll need to be close by the transplant team.

Next we met with the VAD team so they could explain to us the machine that Carter would be switching over to tomorrow. Yes. You read that right tomorrow he’s going back into surgery. There are a number of clots in his chest that we can easily see so he’ll need a wash out and they are going to take him off of ECMO place him on bypass then place him on a new machine that will only help his heart function. All this starts at 7:30a Tuesday morning.

Dr. Bryant will be going back in and working on him. Once on the new machine there’s still a chance that his heart could wake up. This is awesome however this would only delay a transplant and place him possibly lower on the transplant list. During surgery they’re going to wrap up all his tests needed for the transplant evaluation so he can prayerfully be approved and placed on the list quickly. As of now with no heart function he’ll be at the top of the transplant list when approved.

Pending no delays in tests or labs we should know Wednesday afternoon if Carter is approved for a heart transplant.

We received a lot of information today and this isn’t all of it but this is all I could remember at the moment.

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