There’s a moment every parent dreads — when the machines hum louder than your own heartbeat, and your child’s small body fights a battle you can’t see. For Creed and his family, that moment has stretched into days of fear, exhaustion, and fragile hope.
Last night brought a glimmer — a few faint smiles from their brave boy, a spark of the spirit that has carried him through so many storms. But behind those small smiles lies a hard truth: Creed is still unstable.
Doctors are working tirelessly, debating whether to move forward with an MRI or a PET scan to better understand his worsening osteomyelitis — an infection that has already taken so much from him. Sedation had to be added because his body grew too tense and irritable from the pain. His iron levels are dangerously low, and his red blood cells aren’t recovering as they should. Now, an iron infusion may be necessary to help him regain strength.
As if that weren’t enough, his potassium and calcium have both dropped, requiring constant replacement. His white blood cell count is climbing again, despite strong antibiotics. So far, no culture has revealed the cause — except one from his trach site, which carries pseudomonas, a bacteria he chronically colonizes.
This morning brought another scare. Creed’s temperature plummeted, and his care team quickly wrapped him in a warming device — the Bair Hugger — to help bring his body back to normal. All the while, monitors blink and beep beside him, recording every breath and heartbeat, every silent plea from a child too tired to speak.
Creed is now under 24/7 EEG monitoring due to seizures. Doctors have placed him on an Ativan bridge to keep them under control. He hasn’t been fed since the night he was admitted, but the team hopes to restart feeds soon, taking cautious steps toward stability.
His mother calls it “Creed being Creed.” He never makes things simple — never offers a clear sign of what’s wrong. Instead, he gives small clues, subtle hints, forcing his doctors and family to piece together a puzzle that holds his future.
Every specialist, every nurse, every caregiver in the Neuro PICU is working around the clock, collaborating, searching, hoping for the answer that will turn this battle around. His mom writes with honesty and fatigue — the kind that only parents of critically ill children understand. “We’re all exhausted,” she says, “but thankful for his team of doctors.”
For now, Creed remains in the Neuro PICU, not yet stable enough to move to the step-down unit. The family misses their TICU crew, the familiar faces who know Creed’s history and quirks, but they know he’s where he needs to be.
And while the machines keep their steady rhythm, the prayers do too.
“Please continue to pray for our boy and his medical team,” his mom asks softly. “We need answers. We need to figure out what’s going on with our boy.”
It’s a plea wrapped in love and faith — the kind that holds families together through endless hospital nights.
For those asking how to help, the family is facing the mounting costs of travel, food, and long hospital stays far from home. Donations — even the smallest ones — can help with gas, coffee, and daily essentials as they remain by Creed’s bedside.
Every share, every prayer, every message of encouragement matters.
Creed’s fight is far from over, but he’s shown time and time again that he is a warrior — strong, stubborn, and full of light. And even now, in the dim glow of the PICU, that light refuses to go out.
To those who love him, those who’ve followed his journey, and those just now hearing his name — keep believing with his family. Because sometimes, in the hardest battles, hope is the medicine that keeps us going.
