I'm not really sure how to exactly sum up the past 30 hours except that they've been really long and exhausting and confusing at times I guess. I definitely don't feel super excited and super hopeful leaving CHOP as we did last year when we left, but I'm also not feeling totally letdown or dejected. I guess we had hoped to leave having an overwhelming feeling of excitement for the transplant and a sense of timing. I mean we are excited for the prospect of the transplant, but we have absolutely no idea when it'll happen. We thought for sure it would happen next year, but I guess we have to be sensible and realize that maybe it won't be next year.
Basically there are two big factors affecting the timing of Stephen's transplant right now; his size and finding a donor. According to the surgeon, Stephen's just not big enough yet. He's now up to 70.5 cm, which is awesome for a baby like him, but its just not long enough. They could probably get an adult kidney in (an adult kidney is the size of a fist), but they would have a lot of difficulty getting him closed back up. And we'd like for the kidney to fit as best as it can so it doesn't bulge out too much. But getting him to grow long isn't easy and there isn't any way of putting a time frame to that sort of thing.
The second issue is finding a kidney. We have always been under the impression that we could do a kidney swap. Where Bill or I would give a family one of our kidneys and they would give us one. But it turns out that the surgeons aren't really keen on that idea because the swap would be with another hospital, not CHOP, and they don't really like the logistics of that. So they've asked us to find him a living donor. If we aren't able to find a living donor, we'll have to use a deceased donor. Which would be ok, but not ideal. Deceased donor kidneys don't last as long and can also create some logistical issues for us since we live fairly far away from CHOP. So a living donor is the best. But how do you ever go about asking someone to put their life on hold and give our son one of their organs!?!? It just seems unimaginable to us. We could never ever forgive ourselves if something happened to that person or their other kidney! So I'm not really sure what we're going to do.
Either way, we're starting to work on getting Stephen listed on the United Network for Organ Sharing (UNOS) list; aka "the list." He'll go on the list on inactive status (status 7) until we've decided that we're not able to find a donor. Once he goes active, it's usually a couple of months for a suitable organ to become available since children get first priority on the list. But hopefully it won't come to that.
We also learned that there are still some questions that need to be answered about Stephen's liver function. We met with a GI doctor and her boss, the medical director, also came to talk with us. It looks like Stephen's liver function is still ok despite all the scar tissue, but they want us to come back for a special MRI that specifically looks at his liver and the bile ducts so they can get a better picture of what's going on. Thankfully she didn't see any need for a biopsy, so that's good news. What was also pretty cool to learn, is that she sees all if the kids with ARPKD and CHF (both diseases go hand and hand...ARPKD is the kidneys and CHF is the liver) and CHOP has a specific clinic once every three months for all the ARPKD kids. So we're hoping to go back and participate in the clinic next year. And possibly get Stephen into the intensive feeding clinic so we can stop speculating as to why he's not eating and start getting some definitive answers.
I could write so much more about our trip, the transplant process, and our stay at the Gift of Life House, but I think I'll save some of it for later. And I know I'll talk about it some more later, but in the off chance someone might be interested in learning more about being a living donor for Stephen, you can contact the renal transplant coordinator directly. I can answer some questions, but Joanne Palmer at CHOP is the best person to talk with and she's super nice. Her direct number is 215-590-6778 and her email address is Palmer@email.chop.edu.
Thanks everyone for your well wishes on our trip!