Today marks a milestone we have been working toward and hoping we wouldn’t need quite so soon.
Jaime is officially listed for a liver transplant. 💚
One of the biggest questions we’ve been asked is, “What happens now?”
Today, Jaime was officially added to the national transplant waiting list with a PELD score of 7.
The PELD (Pediatric End-Stage Liver Disease) score is a number used to estimate how urgently a child needs a liver transplant. It is calculated using lab values, age, growth, and a few other medical factors. In general, the higher the score, the higher the priority for receiving a liver offer.
Shortly after Jaime’s Kasai surgery, his PELD score was 15. As his lab numbers improved over the past several weeks, his score dropped to 7, which is wonderful in one sense because it means the Kasai has helped improve some of his liver function. However, the PELD score doesn’t tell the whole story.
Even though his labs have improved, Jaime still has significant liver disease, including ascites (fluid in his abdomen), poor growth, and other complications that aren’t fully reflected in the standard PELD calculation. Because of that, the transplant team plans to request exception points, which can increase his score based on those additional medical concerns. We’ll likely learn more about that next week.
A lower score also doesn’t mean a transplant can’t happen. While many children receive transplants with scores closer to 20 or higher, donor organs are matched based on many factors including blood type, size, and location. If the right liver becomes available, Jaime could still receive “the call” at any time.
Yesterday’s visit to Riley was mostly about getting updated labs, height, and weight so everything could be finalized for listing. He is 15 lb 14 oz and 25.4 inches. We also met with the infectious disease team to review Jaime’s accelerated vaccine schedule and what life after transplant will look like.
The biggest takeaway is that after transplant, Jaime will need to be kept fairly isolated while his immune system is at its weakest. For at least the first three months, visitors will need to wash their hands and wear a face mask, and we’ll be limiting visitors as much as possible. Depending on how his recovery goes, those precautions could last even longer as his immunosuppressant medications are gradually reduced.
Thankfully, the visit was otherwise pretty uneventful. (Well…except for Josh accidentally leaving his phone at the lab. Thankfully, we tracked it down! 😅)
Today doesn’t mean transplant is happening tomorrow, but it does mean we’re officially waiting. Waiting for the call that could save Jaime’s life.
Please continue to keep Jaime in your thoughts and that he stays healthy and strong while we wait, that his exception points are approved if they’re needed, and that when the time comes, the perfect liver will be there exactly when he needs it.
Thank you for continuing to follow Jaime’s journey and support our family. We are so grateful to have this community beside us every step of the way. 💚
