Today feels like one of those rare days in the ICU when the air shifts just enough for you to notice. Jax is doing well, and for the first time in what feels like an eternity, there is a plan to close his chest this afternoon.
Even saying those words out loud feels sacred, like they need to be handled gently so they don’t break. In a place where plans change by the hour, having one at all feels like a gift.
The journey to this moment has not been simple or straight. It has been layered with fear, waiting, and countless moments where hope felt dangerously fragile..
When Jax first entered this phase of his fight, nothing felt stable. Every monitor mattered, every number carried weight, and every change in his body felt like it could tilt everything in one direction or another.
Pressors became part of the language of survival. They were the invisible support holding his body steady when it could not yet do so on its own.
Now, those supports are slowly being eased back. His epi is down to 0.03, and he is completely off vaso, numbers that represent strength returning quietly rather than all at once.
These are the kinds of victories that don’t come with celebration balloons. They arrive softly, almost shyly, asking to be noticed but not shouted about.
Jax is still using the external pacemaker, a reminder that his heart is still learning its rhythm again. But the arrhythmias have been minimal, and that calm matters more than words can explain.
His vitals are looking good, steady in a way that allows everyone in the room to breathe just a little easier. In the ICU, steady is extraordinary.
There is relief in seeing his body respond, in watching systems that once needed constant correction begin to find balance. Each stable hour feels like a small promise being kept.
But this journey is never without complication. Just when things seem to settle, something new always finds a way to appear.
A culture from Jax’s urine came back showing what looks like a urinary tract infection. It is not unexpected in this environment, but it is still heavy to hear.
The medical team moved quickly, changing his catheter and collecting a fresh sample to confirm what they’re seeing. At the same time, they started him on a broader-spectrum antibiotic to stay ahead of anything that could grow.
There is a strange mix of gratitude and fear in moments like this. Gratitude that it was caught, and fear of what could happen if it isn’t resolved quickly.
So prayers are being whispered again, this time for antibiotics to work fast and cleanly. The hope is simple and desperate all at once, that this will be one problem that doesn’t linger.
As if the physical hurdles weren’t enough, there is also the emotional and neurological weight Jax is carrying. He is showing signs of ICU delirium, something he has experienced before and something that was incredibly hard on him.
ICU delirium doesn’t announce itself gently. It creeps in through confusion, fear, and moments where reality feels just out of reach.
Seeing it again is terrifying, not because it’s unfamiliar, but because it is. Knowing how hard it was last time makes facing it again feel even heavier.
This complicates the next steps, especially when it comes to sedation. The plan is to slowly work his sedation back, but nothing about this process is straightforward.
Jax already struggles deeply when coming off sedation. His body reacts strongly, and his mind seems to race faster than he can understand what is happening.
He gets scared. Not dramatic fear, but a deep, consuming fear that shows itself in his eyes and his movements.
Watching your child be that afraid changes something inside you. It is a helplessness that no amount of love can immediately fix.
You want to take it away, to explain everything, to make him feel safe instantly. Instead, you stand there, offering presence when answers are not enough.
The medical team knows this balance well. They move carefully, adjusting sedation in tiny increments, watching for signs that his body or mind is becoming overwhelmed.
This is where patience becomes an act of love. Rushing is not an option, even when every part of you wants him awake and free from machines.
So everything slows down again. Each step forward is measured, deliberate, and deeply intentional.
The plan to close Jax’s chest this afternoon feels like a milestone that holds both relief and fear. It represents progress, but it also marks another moment of vulnerability.
Closing his chest means trusting that his body is ready. It means believing that the stability seen today will carry through the procedure and beyond.
There is no room for certainty here, only faith built on evidence and hope built on love. Those are the tools this family has learned to rely on.
In the ICU, time does not move like it does anywhere else. Hours stretch and compress unpredictably, making it hard to remember what day it is or how long it’s been.
Life outside continues without pause. Bills still exist, responsibilities still wait, and the world does not stop just because your child is critically ill.
But inside this room, everything narrows to one purpose. Keeping Jax safe, stable, and moving forward, no matter how slowly.
The weight of constant vigilance is exhausting. It is a tiredness that sleep cannot touch because it lives in the mind and the heart.
And yet, there is also gratitude layered into the exhaustion. Gratitude for skilled hands, for technology, for moments of progress that didn’t seem possible before.
Gratitude for the ability to be here, to witness each step, even the painful ones. Gratitude for being present in the hardest moments, even when they hurt.
The support surrounding Jax and his family has been a lifeline. Every prayer, every message, every kind word has mattered more than people may ever realize.
When you are living inside uncertainty, knowing you are not alone changes everything. It doesn’t remove the fear, but it makes it bearable.
This journey has taught them that strength doesn’t always look like confidence. Sometimes it looks like continuing to show up when you are terrified.
It looks like trusting a process you don’t fully understand. It looks like loving fiercely even when the outcome is unknown.
Jax has already shown incredible resilience. His body keeps responding, adapting, and pushing forward in ways that inspire everyone around him.
He is fighting quietly, not with drama, but with persistence. Each stable reading, each reduced medication, each calm moment tells that story.
The ICU is not where anyone expects to spend this part of life. It steals normalcy and replaces it with alarms, schedules, and constant watchfulness.
Yet even here, love finds ways to exist. It shows up in gentle touches, in whispered reassurances, in staying when leaving would be easier.
Today is not the end of this journey. There will be more decisions, more adjustments, and more moments that demand courage.
But today is a step. A real one.