This week was a roller coaster.

On Wednesday, Jaime got his 6-month vaccines early. He’s also scheduled to receive his MMR, chickenpox, and hepatitis A vaccines early at the end of August as part of his accelerated schedule to prepare for transplant.

Thursday started with labs, and Jaime was an absolute rockstar. One stick, just a few tears, and we were done.

Then came the emotional part.

For the past month, Jaime’s liver numbers have continued to improve. His direct bilirubin has dropped significantly from the high 5s/low 6s around the time of his Kasai surgery all the way down to 1.8. His stools have been a healthy green for weeks, showing more and more color, which tells us his liver is draining. His PELD score has dropped to 9, he’s gaining weight, and his ascites has improved since starting his new diuretic.

Everything seemed to be pointing in the right direction. We walked into that appointment hoping we might hear the words, “Let’s wait.”

Instead, we heard the opposite.

Although Jaime’s labs look encouraging, his liver has already suffered irreversible damage. Because of his ascites and malnutrition, his liver is considered decompensated, meaning it can no longer do everything his body needs it to do. His doctor said there is a small chance he could stabilize, but it is unlikely. She still recommends listing him for a liver transplant now.

Hearing that had us heartbroken all over again.

We knew a transplant was always part of this journey, but with all of the improvements, we had allowed ourselves to hope it might be farther away. Instead, it suddenly feels much closer.

The good news is that being listed does not mean transplant surgery is immediate. Jaime is doing relatively well right now, and continuing to grow is still important. Every donated liver is carefully matched, and the transplant team looks at many factors before deciding who should receive an organ. If the perfect liver became available, they could call sooner. Otherwise, Jaime may continue to wait while gaining strength.

We’re currently waiting on insurance approval before he can officially be listed. Once that’s approved, he’ll need one more set of labs and an updated height and weight. After that, he’ll be listed within 24–48 hours.

There are benefits to listing early. Every day on the waiting list matters, and we’d much rather transplant Jaime while he’s as healthy and strong as possible than wait until he’s much sicker. We just don’t get to have a solid timeline which increases the anxiety. Once listed, our phones will have to be ringer on and by our sides day and night. The call could come anytime. We have 4 hours to get him to Riley so we will have go bags packed and waiting. We are trying to be brave and strong and do all we can to fight for Jaime.

We also discussed Jaime’s feeding. He’s been approved for First Steps services for speech/feeding and oral development, and likely occupational therapy as well. He continues to struggle with choking, gagging, and congestion during bottles, so he’ll have a swallow study on August 5 to see if thickening his feeds may help. Depending on those results, he’ll also be able to start cereal and purées.

On July 28, we’ll meet with Infectious Disease to learn about all the precautions that come after transplant which also sounds overwhelming and scary.

Finally, we saw cardiology. Jaime’s echocardiogram showed a tiny patent foramen ovale (PFO), a small opening in the heart that many babies are born with. The cardiologist was not concerned at all, said it may still close on its own, and officially cleared Jaime for transplant surgery.

So that’s where we are today.

Grateful that Jaime is smiling, growing, and showing us encouraging labs.

Heartbroken that he still needs a new liver.

Hopeful that listing him now gives him the best chance at a long, healthy future.💚