January 19, 2001

Faith through fire – Patient continues road to recovery

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Life in the hospital. Desirae Pratt reads while her son finds comfort in sleeping. A recent epileptic seizure hindered Jeremy’s recovery, but his strong religious convictions remain solid. (photo by Dana Johnson)

Faith through fire – Patient continues road to recovery

Providers credit Jeremy and his family for his amazing determination through the ordeal. (photo by Dana Johnson)

Providers credit Jeremy and his family for his amazing determination through the ordeal. (photo by Dana Johnson)

Jeremy will likely remain in the burn unit until February. Then, according to his doctors, a lifetime of therapy begins. (photo by Dana Johnson)

Jeremy will likely remain in the burn unit until February. Then, according to his doctors, a lifetime of therapy begins. (photo by Dana Johnson)

(Editor’s note: The following is the second of a two-part series about Jeremy Johnson and how his religious conviction has altered his treatment at VUMC)

With third-degree burns over 58 percent of his body, Jeremy Johnson was making a surprising recovery. His body was slowly but steadily fighting back threatening infections, the sleepless march of scar tissue and the psychological fog of depression that so easily could besiege the mind of a patient with such life-altering wounds.

Jeremy’s winning fight was especially impressive considering his limited armamentarium – as a Jehovah’s Witness, his care excluded the precious fortification of blood transfusions, without which his body would grow weary. Small infections would loom larger, scar tissue creep faster. Still, Jeremy progressed.

“He’s amazing,” said Nicole Taylor, R.N., a burn unit nurse assigned to Jeremy. Taylor’s seen the amazing before. Still, she echoes the staff’s impression of Jeremy. “He would want to sit up in a chair for eight hours, on his own. He said he liked it, but I think it’s because he knew what he had to do.”

Jeremy’s goal was to grow strong while letting his body replenish his blood to a level safe enough to withstand surgery. A procedure only performed on 75 to 100 patients around the world each year, it would call for harvesting a few strips of Jeremy’s skin. The biopsies would be sent to a lab in Cambridge, Mass., where scientists with Genzyme would use it as seed to grow enough grafts to cover Jeremy’s scars.

But Jeremy also has epilepsy, and this latent disease reared its head, striking him with a grand mall seizure on Nov. 28, cutting him down in mid-stride of his recovery.

“That was a very scary moment for all of us,” remembered Cheri Adams, a burn care specialist.

“We were all pretty shocked,” burn care specialist Michelle Hilton added. “It really put his progress (for the surgery) on the back burner.”

The seizure caused his body to quake and his right arm to bang against a bed railing, opening his flesh for blood to exit, infection to enter. Moreover, it shook the fiber of faith that held Jeremy ‘s care.

“I felt like we were going down a path we didn’t want to be on,” said Dr. Jeff Guy, co-director of the burn unit and Jeremy’s physician. “We have all this equipment, all this training. We wanted to act, but instead we had to sit on our hands.”

After Jeremy came to and realized his precarious medical position, he held his moral ground. “He kept asking, ‘You’re not going to give me blood, are you?’,” said Stuart Finder, director of the Center for Clinical and Research Ethics.

Guy called in Finder, a reinforcement of the intellectual variety. Finder’s job – like that of the other ethics consultants Mark Bliton, Ph.D., and Richard Zaner, Ph.D., the founder of the Center – is to play third-party observer. They listen to the staff, determine if what they’re doing is aligned with the patient’s wishes and, if so, remind them they’re doing their job the way it should be done. They do not have to agree with the patient’s faith.

Jeremy’s case presents challenges beyond the technical skills that can be learned and practiced to perfection. The ethical, moral dilemmas – to honor Jeremy’s wish to be treated without blood and risk medical complications or disregard a spiritual bond in favor of a decision that’s going to comfort him, speed his recovery – play on the mind, disrupt the psyche.

“There’s a lot of internal conflict,” Guy said.

Jeremy’s care is trying, Taylor admits. Taylor is a traveling nurse with most of her experience in cardiac critical care. “In many areas of nursing, care is a lot about the meds you give,” Taylor said. “Burn care is about the care you give, personally, to the patient. It’s autonomous. You really make a difference in the patients’ care and how they feel.”

But the more intimate care sometimes comes with an emotional price tag.

“When he’s hurting it bothers me,” she said. “Unwrapping his bandages, cleaning his wound with water, wrapping them back up again…it’s painful for him,” Taylor said. “Most of the time he’s very positive. But it’s painful, and when he screams out, that’s when it hurts. Sometimes it just rips my heart out.”

In ethics consults, Finder tries to separate the emotions from the intellect, set them aside so they can be dealt with each in turn. “We talk to people about their fears, their conflicts, their values as they’re making decisions in the situation,” he said. “We try to get them to articulate what it is they are experiencing to create a moral space so they can find what’s going on with themselves.”

What was going on with Jeremy, and with Dr. Guy, Finder said, was typical of dilemmas he sees daily. After Jeremy’s seizure “it was really hard for Dr. Guy to maintain his position. Much more so than on Monday (the day before).”

Jeremy’s treatment already was handled gingerly. Nurses used neonatal test tubes to draw blood, forsaking the normal adult vials in the name of conservation. Sticks were made infrequently to reduce risk of infection. Erythropoietin, a drug that stimulates red blood cell production, already coursed through his body.

But it was Jeremy’s resolve – his continued insistence on adherence to his faith and his commitment to working through therapy – that focused Guy and the rest of the staff.

“He is so motivated,” said occupational therapist Suzanne Guild. Before Jeremy’s seizure, Guild worked with him, reminding his fingers how to hold a cup, his neck how to straighten. It’s an hour of pain, but Jeremy makes progress every day. His low blood counts make him tired, Guild said, and each time he’s immobilized the scar tissue creeps forward.

Guild, Guy and Taylor say Jeremy’s family deserves credit for providing motivation. Burn specialists can tell a patient what to do, whether or not the patient complies is out of their hands. Jeremy’s mother, Desirae Pratt, and his older brother, James Johnson III, provide the will to continue when Jeremy has trouble finding it. Pratt says it’s a mother’s job to be by her son’s side, to scratch the flaking skin on his nose, hold a cup of Gatorade under his chin as he sips from a straw. James Johnson grins when asked if he and his brother are close. They’re brothers, after all, and childhood rivalries and life’s measures tend to wedge between blood relations. But when the life of a brother becomes uncertain, suddenly blood’s value is unmatched.

“He’s like my colonel,” Jeremy said once of his brother’s role in recovery. James Johnson grinned, helped Jeremy stand from his wheelchair. “He’s my brother,” he said.

After his seizure, Guy put Jeremy under general anesthesia, in a “controlled hibernation” to allow his body rest and recover.

On Dec. 27, Jeremy was ready for surgery. His blood counts had climbed from 15 to 25. Two weeks before, Guy had taken grafts from Jeremy’s leg about the size of a stick of gum. It was sent to Genzyme in Massachusetts where it was grown in a special medium, over a special gauze, into enough skin to cover Jeremy’s still-healing wounds. A Genzyme nurse arrived in Nashville on a first-class flight, the seat next to her occupied by a metal case containing 64 grafts of Jeremy’s cultured skin.

Over a period of two hours in the OR, Guy, surgery resident Dr. Ysela Carrillo, and burn specialists Cheri Adams and Michelle Hilton applied the grafts like assembling a patchwork quilt, stapling each 5 c.m. x 10 c.m. rectangle to Jeremy’s legs, arms and a spot on his hand.

Three weeks later, Guy said the grafts were beginning to take, but the time lost before surgery was delaying their growth. Jeremy will be a burn unit patient probably until the first of February. Then, Guy says, it’s a lifetime of therapy.

Jeremy says he’s ready to go home. Out the window above his head a blue sky glows behind magnolia trees. But Jeremy prefers not to look out, not yet. His world is still the burn unit, for a while longer. And until he’s ready to tackle the outside he’ll finish his job at hand, focused on recovery. Emotionally, he’s as fragile as the new skin that clings to his legs, his arms. “We know how far we’ve come and how far we have to go,” his mother said, her words wrapping around her son, carrying him forward. “Sometimes I wonder what the future holds for him.”

She rests easily with one certainty. Through a fire, through days Jeremy almost didn’t make it, her son clutched a belief that, to him, to his faith, assures his future eternally.