The day started with a bit of a letdown. Jake had yet another X-ray, which is typically done in the room using a portable machine while he is lying flat. When the results came back showing absolutely no improvement, it was hard not to feel discouraged. Don’t get me wrong, we know we’ve been blessed far beyond what we deserve, and our hearts are full of gratitude for every miracle we have witnessed. But it’s difficult to maintain perspective when the setbacks start stacking up. We’ve watched Jake fight for his recovery with everything he has, so when that “no change” report came in, it felt like our world just stopped for a moment.

Thankfully, when our world paused, his medical team didn’t. They sent him down to the first floor radiology for a standing X-ray to get a clearer, two-view picture. Jake walked all the way there and back without hesitation, and when the results from that second X-ray came back, our world started spinning again.

The persistent pneumo (air pocket) in his right lung was finally decreasing, and there was no pneumo on the left side at all. While the report showed some edema and trace pleural effusion, it was a massive improvement over previous reports. It was a powerful reminder that sometimes you just need a different perspective to see the healing that is already happening.

Beyond his lungs, Jake is still battling discomfort as his body adjusts to its new circulation. He describes it as a constant burning sensation and feeling overheated all the time. We’ve been surrounding him with fans and ice packs to help him cope. Cardiology confirmed that they have seen this in other Fontan patients post-transplant.

For 17 years, Jake’s body functioned with a very specific, complex circulation. Now, the pressure, blood flow, and oxygen levels have all shifted. He has a powerful, fully functioning new heart providing blood flow his system has never known. His nerves and vessels are essentially “recalibrating” to this new anatomy, and the team is using medication to soothe those over-stimulated nerves while his body finds its new balance.

Today was a lesson in patience and perspective. It’s a reminder that 17 years of one way of living takes time to rewrite, and that one report doesn’t always tell the whole story. We are reminded that the Lord is working in the details, even in the moments when we can’t see the results.

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth.

Isaiah 42:16