Today was supposed to be a step forward.
But when you’re walking a road this fragile, sometimes the bravest decision is to pause.
The planned ECMO trial for Jax did not happen today after a brief but serious episode reminded everyone just how delicate his condition still is. For a short period of time, the ECMO machine had to fully take over the work of Jax’s heart once again.
Doctors believe several factors came together at once.
When the paralytic medication was lifted, Jax became understandably worked up. Sedation then had to be carefully adjusted to help him calm back down. At the same time, his body is retaining a significant amount of fluid — something doctors expected. Diuretics are being used to manage that fluid, but they can lower potassium levels, and Jax has a known history of potassium shifts triggering dangerous heart arrhythmias.
Taken together, it was simply too much for his little heart today.
So for now, the decision was made to give Jax more time to rest.
And there is still encouraging news.
Despite today’s scare, Jax is currently on the lowest ECMO flow settings and is tolerating them well — an important sign that his heart may be growing stronger. The plan is to attempt the ECMO trial tomorrow, and if he does well and passes, doctors will then begin discussing the next step: coming off ECMO.
For Jax’s parents, this moment is filled with conflicting emotions.
They are desperate for the day ECMO is no longer needed — because that would mean lifting sedation and beginning the journey toward removing the ventilator. But at the same time, the ECMO machine is also a lifeline — a fail-safe if his heart falters again. Coming off it is necessary… but terrifying.
It is a decision layered with risk, hope, and faith.
And so once again, Jax’s family is calling on their prayer warriors.
🙏 Pray for Jax’s heart to be strong.
🙏 Pray for wisdom and clarity for his medical team.
🙏 Pray for peace — especially for two parents placing their full trust in God and the hands caring for their son.
🙏 Pray that they will not have to endure another moment like today.
Through fear, exhaustion, and uncertainty, one thing remains constant: gratitude.
“Thank you,” they share, “for continuing to stand with us, pray with us, and love our sweet boy.”
Tonight, Jax rests.
Tomorrow, hope takes another careful step forward. 🤍🙏
