A week ago, doctors weren’t sure Jan-Blaise would survive the night. His breathing slowed to bradypnea.
🚨 At 2:17 A.M., We Were Whispering Goodbye. Tonight, He’s Laughing.
A week ago, the room felt impossibly small.
Monitors hummed. Machines pushed oxygen. Nurses adjusted drips in careful silence. At 2:17 A.M., Jan-Blaise’s family stood at his bedside whispering words no parent should ever have to say.
Doctors weren’t sure he would survive the night.
His breathing had slowed into bradypnea — dangerously shallow and infrequent. Oxygen support climbed to 6 liters. His pupils were fixed and dilated. He had no cough reflex. No gag reflex. Neurological storming and seizures required continuous PCA pumps to control the chaos firing through his brain.
Imaging confirmed the unthinkable: his VP shunt had failed.
His ventricles were enlarged. Pressure was building inside his skull. The clinical trajectory was unmistakable. Left untreated, a failed shunt does not correct itself. It worsens. Rapidly.
The “death rattle” had begun — a sound that strips language from a room.
Everything pointed in one direction.
And yet… tonight tells a different story.
Off Oxygen. Off Pumps. Awake.
In a turn that doctors describe as extraordinary, Jan-Blaise is now off oxygen support. The PCA pumps have been discontinued. Sedation has been weaned.
He is drinking small amounts of water.
He is talking.
He is pointing. Waving. Laughing.
He is coughing on his own — a reflex that days ago was completely absent. He is interacting with family. Tracking voices. Responding with clarity that defies the imaging that once suggested imminent loss.
From actively dying to actively engaging.
There is no clean, linear explanation.
And the medical team is careful with its words.
When Medicine Has No Easy Answer
Physicians do not use the word “miracle” lightly. Clinical environments are built on data, causation, and probability. Reversals this dramatic are rare — particularly after documented shunt failure, neurological decline, and heavy sedation.
But even after sedation was reduced, his improvement continued.
Typically, a failed VP shunt leads to progressive neurological deterioration as intracranial pressure rises. Without intervention, the trajectory is predictable. It does not spontaneously reverse.
And yet, Jan-Blaise’s neurological function has rebounded in ways that challenge that expectation.
Doctors are continuing evaluations to determine whether pressure has stabilized, whether partial function returned, or whether additional mechanisms are at play.
What remains undeniable is this: he was dying.
Now there is hope.
Living Hour by Hour
No one is declaring victory.
His family is clear-eyed about the fragility of this moment. Recovery in cases like this is rarely linear. Swelling can fluctuate. Neurological function can shift. Tumor-related complications remain part of the equation.
They are living hour by hour.
But the emotional temperature in the room has changed. Where there was anticipatory grief, there is cautious gratitude. Where there was finality, there is time.
And time feels sacred.
Radiation: Reassessing the Plan
Before this unexpected improvement, palliative radiation was scheduled to begin Monday. The goal: reduce tumor burden, ease symptoms, and possibly slow progression.
After the rebound, the medical team paused.
If Jan-Blaise continues to stabilize, radiation may still move forward. But the decision now requires recalibration. Radiation carries potential benefit — and risk. Neurological vulnerability complicates timing.
Specialists are meeting tomorrow to reassess.
If radiation is right for him, the family prays it proceeds without complication. If it is not, they are asking for unmistakable barriers to prevent harm.
Every option carries weight.
Every delay carries risk.
Every intervention demands discernment.
A New Hope: Mirdametinib
Alongside radiation discussions, there is another thread of cautious optimism: Mirdametinib.
The targeted brain tumor inhibitor has shown promise in certain pediatric cases. Jan-Blaise’s St. Jude oncologist is currently appealing to insurance for approval. Access is not automatic. It requires documentation, advocacy, and time.
Time that now, unexpectedly, they may have.
If approved, the medication could offer a targeted approach to slowing tumor progression. But like all oncology therapies, it carries unknowns and side effects that must be weighed carefully.
Still, where there was once only crisis, there is now possibility.
The Weight of Decisions
Critical pediatric cases compress families into impossible decision-making spaces. There are no perfect options. Only trade-offs.
Radiation may help — or exhaust him.
Medication may stabilize — or introduce complications.
Waiting may protect — or cost precious ground.
Doctors provide probabilities. Families live with consequences.
And through it all, Jan-Blaise is doing something that few in that ICU expected a week ago.
He is laughing.
A Child Coming Back
Neurological recovery can sometimes surprise even seasoned clinicians. The developing brain, especially in children, possesses resilience that defies adult expectations. Pathways can reengage. Swelling can recede. Reflexes can return.
But this kind of rebound — from blown pupils and absent reflexes to purposeful interaction — remains rare.
No one is offering guarantees.
They are offering gratitude.
From Goodbye to Good Morning
At 2:17 A.M., whispers filled the room.
Tonight, there are small giggles.
A week ago, oxygen lines traced his face. Now he drinks water independently. Days ago, machines breathed vigilance into the room. Tonight, he waves.
The future remains uncertain. Tumor biology does not pause simply because symptoms improve. Shunt function must be continuously evaluated. Neurological status will remain under scrutiny.
But hope has re-entered the room.
And hope changes everything.
What Comes Next
Tomorrow’s specialist meeting will help determine radiation timing. The insurance appeal for Mirdametinib continues. Monitoring for shunt stability remains critical.
The path forward is complex.
But this much is undeniable:
He was dying.
Now there is possibility.
And for a family who whispered goodbye at 2:17 A.M., that possibility feels sacred.
📌 The full update — including what doctors explained about the shunt failure, radiation reassessment, and the medication appeal — continues in the first comment below.
Please continue praying for discernment, protection, approval, and peace.
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