Today has been a day of high-fives and heavy sighs. We are seeing incredible physical breakthroughs but we are also feeling the very real frustration of the waiting game.

In the quiet moments, I have been going back to where it all began. Seventeen years ago, we were young, first-time parents. We didn’t know what it meant to navigate Jake’s heart condition and we certainly didn’t feel equipped to care for a medically complex child. We were overwhelmed and unsure of our place in a world of stethoscopes and procedures.

But in those early days, we were blessed with a home Cardiology and PICU team that saw something in us that we hadn’t yet seen in ourselves. They didn’t just treat Jake, they taught us. They showed us that doctors are experts in medicine, but we are the experts on Jake. We learned how to ask the hard questions and keep asking until we understood.

Today, as we navigate one of the most complex transplant journeys imaginable, we are standing on that foundation. We aren’t those same “naive” parents anymore. Because of those early lessons, we know how to keep going on both the good and bad days.

Jake’s 8-week Cardiac Cath went great, and the news is fantastic. His heart pressures are continuing to improve, showing that his new heart is doing exactly what it was meant to do! The initial biopsy results show no rejection. While we anticipate the final results coming in tomorrow, we are resting in the fact that the mechanical side of his heart looks great.

If you want to know how strong Jake is getting, look no further than yesterday’s trip to Radiology. Instead of taking the easy route, Jake conquered an entire flight of stairs on his way back from the first floor! He isn’t just walking, he is training for life outside these hospital walls.

Jake’s swallow study is scheduled for tomorrow morning at 9 am. We are eager to see the results of last Thursday’s vocal cord procedure and, more importantly, get Jake started on real food so we can finally retire his NG tube.

Unfortunately, Jake’s move to the Neuro Rehab floor was postponed until tomorrow. Jake was ready to go, the transplant team gave the green light, and our bags were packed. However, a delay from the neuro floor kept us from moving. We are still in our old room, waiting for the “go” signal. We are hopeful that he will be moved first thing tomorrow morning so he can finally begin the intensive rehab “burst” that will bring him home.

To our incredible home team, thank you. You taught us how to be the advocates Jake needs and gave us the confidence to find our voice. We have leaned on those lessons every single day of this transplant journey. Jacob will be coming home soon, and when he does, a huge part of that victory is thanks to you. Thank you for seeing our potential and for helping us build the foundation that is bringing us to the finish line.

We are forever grateful.