The day has finally arrived....Stephen is officially listed as a kidney transplant receipt! We left CHOP yesterday knowing that the transplant committee would be meeting later that afternoon to discuss Stephen's case and would likely decided that he would be listed. There were still a few unknown pieces of information that could potentially delay his listing, so I didn't want to jinx it by spilling the beans too soon. But based on his preliminary blood work and what they saw when examining him and his most recent test results, they decided (in the doctor's words) that Stephen is doing excellent and there's no reason why he can't be listed. He's currently listed as inactive status until we can complete a urology study on Stephen's bladder. The surgeon would like to know if Stephen's bladder will work and be sufficient enough for a new kidney before putting it in. He's never had to use his bladder, so who knows what the little thing would do. It's a perfectly good request, so once we get that completed and if everything looks good, he'll be activated!
Since kidneys come up fairly quickly for kids, we've decided that we're going to spend some time over the next couple of months to see if we can find a living donor for Stephen. Stephen is O+ and no one in our families are O's, so we are asking friends and family to help spread the word about Stephen and his need for a kidney. Anyone with either O+ or O- blood and is under the age of 50-55, is a potential donor. If we're unable to find him a living donor, then we'll take the best match that comes up from a deceased donor. Thankfully, Stephen does not have any antibodies (they can accumulate from things like blood transfusions, which he's had), so we hope we'll be able to find a match without too much trouble. If anyone is interested in being tested to see if you are a match, please feel free to email me. I'm also going to (attempt to) post some more information in a link on the right-hand side of the blog so that it remains a permanent fixture on the blog
I cannot begin to even describe what this feeling feels like. It's a huge mix bag of emotions (like so many things we go through)!! I'm super pumped and excited and joyous and can't believe my 13 month old little boy is so healthy that he's ready for transplant! But also a pretty nervous and cautious about the whole thing. There are a lot of unknowns that won't be figured out until the surgeon actually lays his hands on the donor kidney and opens Stephen up to see what kind of toll the disease and infection has taken on his little body. Transplant is not a cure and it's not a life-long fix, but the risk and scary stuff is so overshadowed by the idea and thought that Stephen will live his life dialysis free!!!!!!!! FREEDOM!!!! For both him and us too. And less medications and less stress and less
The really funny part about our visit at CHOP yesterday was that Stephen was a real crank monster for most of the day. No one slept very well the night before, which lead to a cranky Stephen in the morning. We spent Wednesday night at the Gift of Life House, so Stephen slept in a pack-n-play, which is definitely not a good substitute for a crib. He tossed and turned all night. But he really turned on the charm when it mattered the most! Right as the surgeon walked in the room, he sat up straight and shot him a big grin and smile and Dr. Levine couldn't believe how big he had gotten and how alert and good he looked. He didn't even examine Stephen! He's changed so much since the last time they saw him in November. Not only is he bigger, but he's eating solid foods now and is doing so much better with all of his developmental milestones. So I think they were very happy with what they saw.
The days at CHOP are very long and there's a lot of hurry up and wait, but each time I think will just get better and better. Next visit is the first week in April, and we're coordinating it so that we can be part of the combined kidney and liver clinic; the only one of its kind in the country. So I'm pretty excited about that. And at the same time, we're going to get a tour of the surgical/recovery unit.
We've definitely decided that the Gift of House is where we're going to stay while Stephen's in the hospital. It's just so nice and welcoming and comforting and the amenities, such as meals and snacks, that they provide are just amazing. Plus, even in morning rush hour traffic, it only takes us 15 minutes to get to the hospital.
Well I've sort of written a book, but there's so much more info I could share :) But I won't bomber you with too much information all at once. Before I go, here are two pictures from our visit yesterday.
Here's Stephen taking his own blood pressure. He's very advanced for his age :)
And here's the little guy snuggling with monkey and Dad. Poor guy was so tired and slept the entire way home in the car.