Jacob returned home today after his monthly trip to St. Louis to see his transplant team. As always, Jacob was a trooper! He was in good spirits throughout the trip. The drive to and from St. Louis was made better thanks to a three-hour Star Wars music marathon both on the way there and on the way home!

The trip kicked off Tuesday night with Jacob enjoying a pre-appointment treat of his favorite Alfredo pasta at the hotel before settling in to watch The Office.

His schedule was packed on Wednesday with an EKG, a device check, labs and a dressing change, as well as appointments with his liver team, cardiology, and electrophysiology (EP). The appointments were very encouraging! Both the liver and cardiology teams were incredibly proud of the progress Jacob is making, especially with his ongoing goal of gaining weight and his hard work in physical therapy. They commended him on his commitment to getting stronger at home, which is crucial as he waits for his transplant.

It seems a follow-up cardiac catheterization will be in our future this fall, a procedure that will be repeated every six months until he receives a heart and liver.

Jacob will remain listed as a 1B for transplant. The team’s message was clear: continue getting stronger at home and maintain his positive momentum. We couldn’t be more proud of Jacob for his strength and dedication.

As he and we continue to wait for the call, we are filled with hope and gratitude.  For his care team, from family and friends and for everyone following along here on the COTA for Jacob’s Hope website.