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nerdybird26 karma

Not OP, but my son was 4 when he had his transplant. He was born with dilated cardiomyopathy and was treated for that until he rapidly became ill. He was treated for pneumonia but became progressively worse until his heart stopped twice.

He was put on ECMO for 5 days, then a Berlin heart. We were in the children's hospital for almost three months before a heart became available. Along the way there were a number of problems, such as bleeding in the brain, clots which required multiple surgeries.

He was able to leave the hospital about two weeks after transplant. Those two weeks were very difficult as he had to recover and learn how to do many things, such as walk again. He had been in a diaper for months.

When he started waking up for the first time after transplant we couldn't figure out what he was saying. The curtains in the CICU had circles on them and he thought they were bubbles. When we figured that out that was the first time we felt some honest relief that he was coming back to us.

That was four years ago, he was hospitalized a few times earlier on for general illness and fevers (his underlying genetic condition causes him to be neutropenic so he is susceptible to infections). A year and a half half out he was hospitalized because he was sick and we couldn't figure out why. His primary immunosuppression medication stopped working as it should for him and was making him sick so it was changed.

He is now a healthy kid and on the fewest number of medications that he has ever been on. We are on as complet lockdown as possible to prevent him getting sick, but this is actually the third time we have had to do this. It is just harder on him now because he is so social. His best friend calls several times a week and they talk while playing games together.

One of the biggest differences for children with transplants is that they are still growing and the medicine will change a lot more in the early years than later in life.

You and your family are in my thoughts. I wish you all the best.

nerdybird2 karma

I hope that your little one gets better soon.

Our son had his chest open for a few days after transplant because of the swelling. He was kept asleep during this time until after they closed him.

They are much more resilient than you can imagine.

nerdybird1 karma

You had to work very hard to accomplish your achievement. What is the most memorable part of your journey that you will never forget?