Rare PRES Diagnosis Following Brain Surgery
Then, suddenly, David’s oxygen levels began to improve.
“They were preparing for ECMO and suddenly his oxygen went up to 95,” Cindy said. “I felt like it was divine intervention. I had people praying for him all over the world.”
But David’s recovery remained extremely complex.
He required a tracheostomy — a surgically placed tube in the neck that helps keep the airway open — and remained in the PICU at CHRISTUS Children's for five weeks before eventually transferring to the surgical floor.
About two weeks after surgery, David developed a severe fever reaching 106 degrees. Despite extensive testing and involvement from infectious disease specialists at CHRISTUS Children's, doctors initially could not determine the cause.
“The fever triggered three febrile seizures,” Cindy recalled. “He was unresponsive for weeks until we finally got a rare diagnosis.”
David was diagnosed with posterior reversible encephalopathy syndrome (PRES), a rare neurological condition that can occur after major brain surgery and is associated with swelling in the brain and dangerously high blood pressure.
Once PRES was identified, physicians quickly adjusted David’s medications to better control his blood pressure.
Cindy describes what happened next as “nothing short of a miracle.”
“Three days after they started treating the PRES, David squeezed my hands,” she said. “That was the moment I knew he was still with us.”
Gradually, David became more alert. By the time he transferred out of intensive care, he was communicating through a whiteboard and text messages.
Because of the tracheostomy, David was unable to speak, and damage caused by the tumor left him unable to move his facial muscles. He also could not swallow, so he received liquid nutrition through a gastrostomy tube (G-tube) placed directly into his stomach.
Intensive Rehabilitation Helps David Regain Strength and Independence
David underwent intensive rehabilitation at CHRISTUS Children’s, receiving physical, occupational and speech therapy several times a week. His care team worked closely with him to improve his mobility, strength, communication and swallowing skills as he recovered.
While he still struggles with double vision and muscle weakness, his determination remains strong.
“He texts his doctors questions all the time, and they answer every one in detail,” Cindy said. “It’s a great sign that he wants to understand everything that’s happening and is focused on getting better.”
As David continued his rehabilitation, he also underwent additional treatment to reduce the risk of the tumor returning.
David was diagnosed with a grade 2 ependymoma, a tumor with malignant potential. Dr. Bali was able to remove most of the tumor during surgery, but a repeat surgery to remove the remaining tumor was considered too risky. Because David had a subtotal surgical resection, radiation therapy was the standard next step in his treatment.
David underwent a five-week radiation regimen consisting of 33 treatments.
Throughout David’s radiation treatment, Dr. Ricky Rodriguez, an oncologist at CHRISTUS Children’s, helped guide the family and answered their many questions along the way. According to Dr. Rodriguez, David’s tumor subtype has a very favorable prognosis and is less likely to recur, but he will require ongoing surveillance with physical exams and MRI imaging.
“He explained everything so clearly,” Cindy said. “He is very caring. In fact, all the nurses and therapists who cared for David, especially during his most critical days, have been phenomenal.”
After a lengthy hospitalization, David was discharged home on April 30, 2026. Just one week later, he completed all 33 of his radiation treatments and was presented with a certificate of completion, a milestone that marked the end of another major chapter in his recovery.
Today, David continues to make steady progress. While he still has a tracheostomy, his pulmonologist and ENT specialist are discussing decannulation — the removal of the trach tube — in the near future. He is awaiting a trach cap and will undergo a sleep study, both important steps toward breathing independently.
David also continues to work on speech and swallowing through therapy at CHRISTUS Children's Rehabilitation. While he still receives most of his nutrition through a G-tube, his speech has become more articulate, and he is gradually relearning how to swallow safely.
The progress, though gradual, has been encouraging. Recently, David ate five chicken nuggets on his own and drank a chilled 12-ounce Coca-Cola with the help of a syringe — milestones his family celebrated as signs of continued recovery.
Family Praises Multidisciplinary Care at CHRISTUS Children’s
Although David has made significant progress in rehabilitation, he remembers very little about the weeks following surgery. He recalls the headache and the ambulance ride, but little else.
Now, David’s family is focused on the future and hopeful he will continue regaining his strength, speech and ability to breathe independently once the tracheostomy is removed.
“He tells me physically he feels stronger because of therapy,” Cindy said. “But mentally, I know he is scared. He often sends me texts about wanting to live.”
Her response never changes.
“You are going to live,” she tells him. “We are at CHRISTUS Children’s. Your doctors are doing everything they possibly can to help you get better, and everyone is praying. You’ve already come so far, and we’re going to keep taking this one day at a time.”
