Ezra’s Liver Transplant

Link to fill out donor questionnaire

Hi! I’m Karen, Ezra’s mom.

I’ve been trying to gather my thoughts and process what is going on.

When we were first called about this precious boy, the very little information given included the statement, “…he’ll probably need a liver transplant within the year.”

We said yes to him, not knowing how long he’d stay. It’s been ‘easy’ to know he might need a transplant SOMEDAY while not needing a transplant now. His first year with us was eventful, with travel, hospitalizations, and surgeries. We had a solid 3 years of relatively good health, and the ability to focus on other needs he has (speech, PT, sleep). You wouldn’t know he’s sick. He is a ball of charm and energy and is going at 110% at all times.

I was given the impression that our trip to NYC for transplant evaluation was “very preliminary” and that there was still the possibility to try other interventions. That this was just to create a chart for him and get baseline information documented with the liver team.

That was not the case. I can describe it only as an orientation. We had consults with each individual of the liver transplant team (2 of which know Ezra from his time in NY in 2019 - one is the surgeon that fixed him up then). Surgeons, infectious disease, nutrition, social work, cardiology, ultrasound, bloodwork, echo…it was a long few days for our guy. All this to say, he’s going on the list. His liver function has been declining and since the summer he’s had bloodwork, ultrasound, endoscopy, MRI, and biopsy. There’s so much scar tissue (cirrhosis) that blood isn’t filtering through efficiently. This is putting extra pressure on other organs and can ultimately put stress on his heart and lungs. He has an enlarged spleen already.

We are still early in the process and his surgeon shared with me the advantages to getting him on the list now -

1) he’s well, not in and out of the hospital, fighting infections, etc. This means that we don’t have to settle for the first liver that comes along. We can be choosy.

2) the longer he’s on the list, even if lower priority at first, the easier it is to get him bumped up based on length of time waiting.

3) we have time to find a living donor match, which may give us more control over preparing, planning, and scheduling.

That said, Ezra can accept a living donor and we have a QR code that leads to a questionnaire for anyone that may want to consider donating.

So, whether we have the luxury of choosing a date on the calendar, or we get a call at 3am on a Sunday that we’ve gotta go, recovery is going to be a whole journey for our family. We are to expect about a week in the PICU following transplant. He will have follow up visits multiple times weekly for the first month post-op, then weekly for months 2-3, then every other week for months 4-6. He will likely continue to be seen in NYC 1-2 times per year indefinitely. He will be discharged from the hospital on somewhere near a dozen medications. His immune system will be suppressed. If all goes smoothly, we’ll be able to live at the Ronald McDonald House. Yes. Live there.

I’m worried for this little boy and what he’s about to go through. I’m worried for my kids who really can’t comprehend how our lives are about to change, even if temporarily. I’m worried for the logistics, finances, everyone’s mental and emotional health, and our littlest baby as well.

We are going to be trying to put together a plan for when this happens, as well as hoping to have a ‘go plan’ for if things do happen suddenly at any point. We are grateful for our family. Our support system. Our VILLAGE. We know that we’re going to need you more than ever and we are trusting that God will be calling you to rally around Ezra and our family in all the different ways.

Any funds raised will help with travel expenses and supporting our guy through this.