The action in the Hermans’ front yard is a blur of blue jeans and white shirts; two boys climbing trees, turning cartwheels, chasing a soccer ball, behaving like typical eight-year olds. When they occasionally slow down, you see they look exactly alike—almost. Jerry and Josiah (or Josie for short) are identical twins. Jerry is the one with the cloth around his neck, covering the hole where the tracheostomy tube used to be. That and the plastic leg braces decorated with orange tigers that he sometimes wears are the only telltale signs of what Jerry’s been through since January 2009.
It started with a Christmas-time cold that wouldn’t go away. Then Jerry complained of leg pains at night. “I thought maybe he just didn’t want to go to bed,” mom Nita recalls. “Jerry and his twin brother do that sometimes. He said—it just feels funny. It’s achy. So I gave him a little bit of medicine and went to bed.”
The following night, it was Jerry’s hands that felt funny. Maybe growing pains, mom thought as she gave Jerry another dose of Tylenol and tucked him in.
The next morning, Jerry’s parents awoke to a faint knock on their bedroom door. Jerry was on the floor. “I had to crawl like an Army man with my legs dragging,” Jerry explains. “My mom said—what happened? Why are you crawling like that? And I told her—I can’t move my legs. I can’t move my body.”
Brother Josie adds, “Then they hurried up and rushed him to the hospital and I was very terrified.”
In the span of just two hours from when they woke up, headed to their pediatrician’s office and then on to the Emergency Room of All Children’s Hospital, Jerry went from not being able to walk—to not being able to sit upright. He could barely lift his arm off the exam room table and was having trouble swallowing.
The physician that day in All Children’s ER was Laleh Bahar- Posey, MD. She heard about Jerry’s leg and hand pain, and the muscle weakness rapidly working its way up his body—and quickly concluded a possible diagnosis with deadly potential for Jerry. Guillain-Barré Syndrome is something she sees occasionally though seldom this severe.
“I think in my fifteen years as an ER physician, I’ve had probably three cases where the patient wound up intubated—which is where we put a tube down the airway and connect it to a ventilator to keep the patient breathing. With Jerry, my main worry wasn’t whether he was going to intubated —but when.”
Mom says she and Jerry’s dad —a local church pastor—were in the hallway praying when Dr. Posey broke the news.
“She said—if it is what I think it is, we have a very small window of time. We’re going to need to intubate him immediately. Do we have your permission? —And your whole world just kind of crashes.
“Jerry was looking at us, trying to ask what was going on. We just prayed with him, told him we love him and said—you’re just going to take a nap. We’re going be here when you wake up. And our journey began.”
Jerry’s Journey— Destination Unknown
Jerry was admitted to the Pediatric ICU in a drug-induced coma, with a ventilator breathing for him. Among the nurses, respiratory care therapists, pulmonologists and intensive care specialists gathered to care for Jerry was pediatric neurologist Joseph Casadonte, MD, who focuses on problems of the brain and nervous system.
He explains that nerves can be thought of as electrical wires. Their insulation sheath is made of a substance called myelin, which helps to conduct electrical activity. Guillain-Barre causes dramatic weakness by affecting the myelin insulation. It often strikes shortly after the patient has fought off a virus or cold.
Casadonte likens it to “an immune reaction that’s gone haywire. The body’s immune system recognizes something on the invading virus or bug—basically a piece of protein. Now if that piece of protein looks a lot like the protein on the myelin insulation, then the body mistakenly attacks the myelin with antibodies.”
To stop further myelin damage, Jerry’s care team resorted to a treatment called plasma pheresis. In his first days in the PICU, Jerry’s blood was pumped through a mechanism that filtered out the antibodies before returning the remainder to his body.
The damage already done to Jerry’s body would take time to heal. How long—and how much would heal was uncertain. What was clear once Jerry came out of the two-day drug-induced coma was that the damage was extensive.
He was almost completely paralyzed.
Mom remembers preparing for the moment Jerry first opened his eyes. “I said—I know you want to talk to me. You have these tubes in your mouth and you can’t. I asked—can you move anything? If you can, I need you to give me a yes, just lift an eyebrow— something—twice. He began to move the right eyebrow twice, but the left one just stayed. And I said, that is our communication.”
It would be their only method of communication for weeks, until Jerry slowly began to regain muscle control—first in his face and chin. Then the tube down his mouth to help him breathe was exchanged for an incision into his throat to allow for a tracheostomy or “trach” tube.
Five weeks into his PICU stay, Jerry began to mouth words. Mom and a cadre of acute care rehabilitation therapists became lip-readers. Jerry’s days were filled with routines meant to loosen stiff muscles that he still couldn’t move. Though paralyzed, he could still feel—and the therapy was often painful.
And now that he’d regained muscle control of his face, Jerry could once again shed tears.
Mom says he shed plenty just looking at the family photos surrounding his hospital bed, especially the ones with his twin brother. “I was just thinking—I miss Josie, I wish he was here with me holding my hand,” Jerry explains now with a sigh.
Sixty days after he’d crawled to his parents’ room, Jerry finally returned home. It was a celebration complete with hand-made banners from his seven siblings. They anxiously showed him around the house, where accommodations had been made for Jerry’s personalized wheelchair, complete with ventilator support.
Jerry could only move the muscles from his shoulders up. Regaining control over the rest of his body would take time and daily outpatient sessions at All Children’s—three hours of speech, occupational and physical therapy, Monday through Friday. A whole new group of All Children’s staffers picked up the work of helping Jerry move and strengthen muscles as his body slowly healed. It would be three months before Jerry “graduated” from speech therapy, another four months before his occupational and physical therapy appointments dropped to four days a week. Last November, Jerry’s trach tube was removed so he could finally breathe on his own—and eat! This January, Jerry “graduated” from occupational therapy. He now attends physical therapy one hour a day, just two days a week.
That’s given Jerry and the whole family more time to appreciate how far they’ve come and how many people have been part of this journey. They’ve assembled a scrapbook— Jerry’s Journey Book—with photos, many in All Children’s Hospital. There’s nurse Fran, “Jerry’s number one nurse,” mom notes, “he wanted to bring her home with us.” Fran keeps a copy of her photo with Jerry on her refrigerator, “so that whenever I’m having a hard day, I go home and it reminds me of why I do this.”
And there’s nurse Chris and respiratory therapist Shane, two guys who hit the hospital’s outdoor basketball court to amuse Jerry on a rare pass from the PICU. “I loved that because Jerry would mouth to me—‘you tell them when I get better I’m coming for them!’ It gave him a goal to work toward.”
So many people, too many to mention.
“They know who they are,” mom says. “And they’ve been just a tremendous blessing to our life. It’s not people that are just doing their job. It’s people who have come in and taken a personal interest in myself, in my son, in our family.”
“Medical skill is one thing, but compassion is another. And when it comes together, it affects people’s lives forever.”
©2013 All Children's Hospital - All Rights Reserved