WALLINGFORD — As Connor Reed held the railing of a staircase in the gymnasium at Gaylord Hospital, his arms shook, his knuckles were white and his eyes were focused on his wheelchair four steps down. Breathing deeply and with his physical therapist holding him, Reed lifted his left leg and fought to control the shaking as he tried to find the next step and plant his heel.
“Good job,” said physical therapist Tim Kilbride. “You’re doing good.”
After stepping down from the last step onto the floor, Reed turned around, sat in his wheelchair and exhaled. He reached up and gave Kilbride and Erika Schramm, a physical therapy student, a high-five.
“I’m impressed!” Kilbride said.
The 18-year-old Sheehan High School senior is completing his rehabilitation at Gaylord. It was the first time Kilbride asked Reed to walk up and down a small set of steps — a difficult task given what Reed has been through.
Reed has been hospitalized since Jan. 2. It started with a migraine that never went away. It was so severe that it left him feeling nauseated and unable to stand up. His mother, Maureen Reed, brought him to the hospital late in the night.
“It was 3 a.m. and my mom thought we’d be in and out in a few minutes,” Connor Reed said this past Tuesday. “That was 68 days ago.”
Connor Reed was admitted to MidState Medical Center on Jan. 2 and initially diagnosed with viral meningitis.
Although he was at the hospital, Maureen Reed said it didn’t seem like her son was ever improving, with his symptoms persisting and new ones developing.
“At MidState,” said Bob Reed, Connor Reed’s father, “we learned it was something more than viral meningitis.”
On Jan. 11, Connor Reed was transferred to Yale-New Haven Hospital.
“When he was transferred to Yale, panic set in,” Maureen Reed said.
“And hopelessness,” added Bob Reed.
Connor Reed was diagnosed with acute disseminated encephalomyelitis, a rare inflammatory disease of the central nervous system.
“It’s triggered by something in the environment ... to take away the myelin in the central nervous system,” said David Rosenblum, director of physical medicine and rehabilitation at Gaylord and Connor Reed’s doctor.
Myelin is part of the covering around the nerve, Rosenblum said. Because it involves the body attacking itself and demyelination, the disorder is similar to multiple sclerosis, Rosenblum said. Fevers, weakness and numbness are common symptoms.
Loss of motor control is caused by lesions developing on the spinal cord that prevent signals from reaching the brain, Rosenblum said. When the myelin is disrupted, the signal doesn’t progress as well or it gets to where it needs to in a way that isn’t normal.
At MidState, the lesions were barely visible, and at Yale they were noticeable and large, Bob Reed said.
He was placed in intensive care at Yale-New Haven, where he received a breathing tube and was diagnosed with pneumonia.
Both Bob and Maureen Reed said their son’s time at Yale-New Haven was agonizing.
“He was comatose. You don’t know what’s going on,” Bob Reed said. “I was at work and nervous and I got text messages telling me something else was going wrong for Connor.”
Being in the same room wasn’t any easier. Maureen Reed has been with her son every day of his hospitalization.
“I lived it day by day. It’s been very difficult ...When he was comatose, it was very sad. He was so sedated and paralyzed,” she said.
On Feb. 4, over three weeks after he was transferred to Yale, Connor Reed was taken out of the intensive care unit.
“He opened his eyes and said, ‘I love you’ and ‘I’m thirsty,’” Maureen Reed said, as she smiled and laughed. “It was a sense of relief that he was still there.”
The doctors never gave the Reeds the impression that their son wouldn’t make it — in fact, the mortality rate for the disorder is between 5 and 7 percent, according to a Cambridge University Press book, “Demyelinating Disorders of the Central Nervous System in Childhood.”
But the couple worried about the possible diminished quality of life that awaited their son.
“No one knew the effect this would have,” Maureen Reed said. “He was only blinking his eyes and doctors said this is all he may have in life.”
Determined to find a way
Speaking slowly and softly, his eyes watering, Bob Reed reached his hand out and held his wife’s hand. He said after Connor Reed was taken out of intensive care, they never knew “how bad it was.”
On Feb. 8, Connor Reed was transferred to Gaylord, where he began rehabilitation. He doesn’t remember his time at Yale; only hearing stories of what it was like and how he tried to rip the breathing tube out, which led to having his arms restrained.
His rehabilitation involves physical and occupational therapy sessions, as well as strengthening exercises for his upper and lower body. Kilbride said he plans on pushing Connor Reed as much as his body can take. His physical therapy sessions include walking with a walker and going up and down steps. Although Connor shakes and is visibly fatigued, Kilbride is impressed with his progress.
“It’s remarkable to see when he first came to us, he really couldn’t move his legs much at all,” added Rosenblum. “... Just a few weeks ago, we were celebrating that he could move his toe. Then he started to move his leg a little bit more. Now, we’re celebrating the beginning of using that strength for long-term mobility.”
His original discharge date was March 15, but with the progress he’s made and promise of further rehabilitation at Gaylord, Connor Reed said it was changed to March 22. According to the National Center for Biotechnology Information, 50 to 75 percent of patients fully recover in a period of one to six months.
“I’m amazed by it,” Connor Reed said of his progress. “I’m not surprised by it because I’m so young and they said it helps. But I’m amazed by it.”
He’s looking forward to returning to school and seeing everyone again. He’s captain of Sheehan’s tennis team and he’s eager to return to the courts, he said. Whether he can play is unclear, but he’ll be involved somehow, he said.
Throughout his entire ordeal, the community united to support him. A pasta dinner was organized to raise money for the family. A community page on Facebook was created, which helped the family get through the situation. Maureen Reed said her entire family is thankful for the support and her son plans on using a portion of the money to “pay it forward.”
Connor wakes up every morning to a wall covered with cards, banners, posters from his classmates and residents around town.
“It’s unbelievable,” he said. “It has helped so much. The prayers, kind words — it’s all unbelievable.”
He’ll continue his physical therapy as an outpatient when he’s discharged. Although a full recovery is uncertain, Connor Reed is optimistic.
“My grandfather printed out a paper,” he said, “and tacked it on the board in my room. It says, ‘Find a way.’ And it means don’t just sit there and quit. You get up and find a way.”