Watch 5-yr-old Ari learn he's getting a new heart

After 211 days waiting for a new heart at Boston Children's Hospital, the call came for Ari Schulz.

Ari’s new heart began beating in his chest spontaneously at 11:32 p.m. on Friday, March 3.

As of now, he’s stable in the cardiac intensive care unit. He is deeply sedated and has a breathing tube in. He looks like he’s resting comfortably. Beyond that, he’s still in the weeds and has a lot of mostly anticipated challenges to overcome so there’s not much of a medical update.

An update via A New Hope:

What comes next short-term?

Ari has some tightness in his pulmonary vasculature. We’re treating that to calm it down, and it calms down fairly well with extraordinary medicine. But we need it to calm down with just everyday medicine. So we wait for that.

Once it’s calm enough, we pull the breathing tube and see how he does. Hopefully the tube stays out and he can breathe on his own without too much support.

He gets a ton of medicines right now, part cardiac, part to shut off his immune system.

Next week he gets a cardiac cath to check his pressures, and to do a biopsy. The biopsy is to see to what extent Ari is rejecting his new heart. We expect some level of rejection at this point as most kids like Ari have rejection at first. The hope is that it’s not too strong.

If it’s not too strong, and he’s gaining strength, we go to the floor to recover.

How long until Ari comes home?

Before this process, we were told to expect 1-3 months post-transplant. Right now it’s looking like…1-3 months. Shorter than that is possible but unlikely. Longer than that would mean his struggles are extraordinary. Expectations don’t really matter though. We’re day to day.

Is his heart fixed? Is he better now?

No, not really. Getting a new heart, we were told, is like trading one disease for another. He’ll be on a lifetime of meds, and there are a lot of health challenges and risks.

When he was listed, Ari was given about a 70% chance of surviving the first year. This is lower than other children with fewer risk factors. Most of the extra question marks are due to surviving the immediate transplant period, pulmonary vascular resistance, and rejection.

His future is spelled out here.

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