There are seasons in life when time seems to slow down—when every breath feels measured, every update carries weight, and every small change can mean everything. For Jaxen and those who love him, this is one of those seasons. His fight for stability has become a daily test of endurance, faith, and unwavering hope.
Right now, Jaxen stands at a critical crossroads in his medical journey. Rising infection markers have raised serious concerns among his care team, signaling that his fragile body is facing yet another battle. In a pediatric intensive care unit, numbers on a monitor are never just numbers. They are stories—of inflammation, of stress, of a body working overtime to survive. And in Jaxen’s case, those numbers have prompted swift and decisive action.
A Day of Crucial Medical Decisions
In response to the elevated infection markers, the medical team made a series of significant changes designed to eliminate potential sources of infection and give Jaxen the strongest possible chance at recovery.
A new PICC (Peripherally Inserted Central Catheter) line was placed, allowing doctors to remove the central line that had previously been inserted in his neck. While central lines are often lifesaving tools, they also carry infection risks, particularly when used over extended periods. Replacing it was a strategic move—one made with caution and care.
At the same time, his left hand IV, which had already failed, was removed. What may sound routine in a hospital setting is never routine when it involves a child who has already endured so much. Every procedure, every insertion and removal, represents both vulnerability and resilience.
In a further effort to reduce infection risks, Jaxen’s chest tubes and catheter were also taken out. Each removal marked a small but meaningful step toward minimizing complications. These were not just technical adjustments; they were hopeful recalibrations—carefully planned moves in a delicate chess match against infection.
A Pivotal Turning Point: Removing the Paralytic
Perhaps the most pivotal moment of the day came with the decision to remove the paralytic medication.
Paralytics are often used in critical care to prevent movement and allow machines—like ventilators—to do their work effectively. But they are not meant to be permanent solutions. Lifting the paralytic is always a moment of truth. It reveals how the body is coping and whether sedation is adequate.
When the paralytic was discontinued earlier in the afternoon, the team quickly realized that the narcotics Jaxen had been receiving were no longer providing effective relief. His body, having endured prolonged exposure, did not respond as expected. This is one of the harsh realities of intensive care: the body adapts, sometimes in ways that complicate treatment.
The medical team acted swiftly, transitioning him to Propofol, a powerful sedative often used for deeper, more controlled sedation. The difference was almost immediate.
When the paralytic was lifted at 4 p.m., instead of agitation and distress—as had occurred in previous attempts—Jaxen remained noticeably calmer. It was a subtle shift, but in the world of critical care, subtle can be monumental. Calm means stability. Stability means opportunity.
For a brief moment in a storm of uncertainty, there was quiet.
The Fragile Balance of Blood Gases and Blood Pressure
Even with these adjustments, the road ahead remains fragile. One of the most pressing concerns now is maintaining stable blood gases. Blood gas levels reveal how effectively oxygen is entering the bloodstream and how well carbon dioxide is being removed. For a child in critical condition, even slight imbalances can cascade into serious complications.
Equally concerning is Jaxen’s blood pressure. His body, already exhausted from prolonged stress, is sensitive to even minor agitation. When he becomes worked up—even slightly—his blood pressure can spike or drop unpredictably. These fluctuations increase the risk of arrhythmias, irregular heart rhythms that can further complicate his recovery.
This is why calm has become more than a comfort—it is a medical necessity.
The team is not just fighting infection; they are fighting instability. Every medication adjustment, every tube removal, every monitoring parameter is part of a broader strategy: keep him steady. Keep him safe. Give his body space to heal.
The Emotional Weight on a Family
Behind the machines and clinical updates stands a family carrying a burden no parent should ever have to bear. Watching a child fight for stability in an ICU is an experience marked by sleepless nights, whispered prayers, and the constant tension between hope and fear.
Parents learn to read monitors like second languages. They memorize oxygen saturation ranges. They celebrate incremental improvements that others might overlook. A stable reading becomes a victory. A calm hour becomes a blessing.
Jaxen’s body is small, but his fight is enormous. And while his strength is undeniable, even the strongest little warriors grow weary. The toll of infection, sedation, procedures, and uncertainty weighs heavily—not just physically, but emotionally for everyone involved.
Yet through it all, his family remains by his side. So does his medical team. And so does a growing community of supporters who refuse to let hope fade.
The Power of Collective Hope
For those following Jaxen’s journey from afar, it is easy to feel helpless. What can you possibly do when a child is battling infections and unstable vitals in an ICU?
But support is never insignificant.
Every message of encouragement, every shared story, every whispered prayer matters. Hope may not be measurable like blood pressure or oxygen levels, but it is powerful in its own way. It sustains families. It fuels resilience. It reminds exhausted parents that they are not alone.
There is something profoundly human about gathering around a child in need—even if that gathering happens across miles and screens. Collective hope creates a network of strength that wraps around hospital rooms and quiet waiting areas.
A Future Worth Fighting For
Right now, the goal is stability. Stable blood gases. Stable blood pressure. Stable rhythms. Stable infection markers.
But the vision reaches far beyond that.
The prayers being lifted are not only for survival—they are for thriving. For a future where Jaxen’s hospital bed is replaced with playgrounds. Where IV lines give way to scraped knees from running too fast. Where monitors are replaced by laughter.
The road is uncertain. There are no guarantees. Critical care is rarely linear; it is a landscape of progress and setbacks, hope and recalibration.
Yet even in uncertainty, courage takes root.
Jaxen continues to fight with everything he has. His body may be fragile, but his spirit has proven resilient time and time again. The medical team remains vigilant. His family remains steadfast. And a community continues to believe in the possibility of healing.
Standing Together in the Storm
Moments like this remind us of life’s delicate nature. They remind us that strength is not always loud. Sometimes it is quiet endurance. Sometimes it is the decision to keep believing, even when fear whispers otherwise.
So we continue to pray—for healing from infection, for stable numbers on every monitor, for peace to wash over Jaxen’s small, tired body. We pray for wisdom for the medical team and for supernatural strength for his parents.
And most of all, we pray that this chapter—however painful—becomes part of a larger story of survival and restoration.
Jaxen, your fight is seen. Your courage is real. And you are not alone.
We will keep hoping.
We will keep believing.
We will keep fighting with you. 💙