LEXINGTON, Ky. (April 9, 2015) — On a Sunday night in March, 16-year-old Jessie Sharp munched on an order of breadsticks delivered to his hospital room at the Kentucky Children’s Hospital (KCH) pediatric intensive care unit. He asked to delay his bedtime to complete Spanish homework. At the same time, machines at the side of his bed facilitated the function of two vital organs.
Life in the PICU was a drastic change for the teen who was shoveling snow on his family’s Cynthiana farm only days earlier. With a system of catheters running through his body, diverting the flow of blood to external machines doing the jobs of his lungs and kidneys, Jessie was at the very beginning of his road to recovery. But Jessie’s capabilities through the course of critical care — working on homework, communicating with his family and even walking throughout the hospital — reflected some semblance of normal life.
“I’m thinking, this is unbelievable,” Dr. Scottie Day, chief and medical director of the pediatric critical care unit at KCH, said. “We have a kid whose kidneys and lungs essentially don’t work, and he’s sitting here eating pizza and doing his Spanish homework.”
To the KCH health care providers aware of Jessie’s critical state, watching him stay active, alert and mobile, in spite of lung and kidney failure, was an incredible sight. His activity was only possible through an extracorporeal membrane oxygenation, or ECMO, machine and a multidisciplinary health care team with the expertise to integrate the machine into pediatric care. Getting a patient to ambulate, or walk, while connected to ECMO is a milestone only a few pediatric hospitals around the nation have accomplished.
After showing ongoing symptoms of a common stomach virus in late February, Jessie visited a local hospital where he underwent precautionary tests. His mom, Dianna Sharp, was waiting in line at the local pharmacy when she received an urgent call from Jessie’s pediatrician. By the time Jessie was transported to KCH, his kidney and lungs were declining from the effects of a rare and undiagnosed autoimmune inflammatory disease. A pediatric critical care team led by Day and Aftab Chishti, a pediatric nephrologist at KCH, intervened quickly to support Jessie’s failing organs.
Ultimately, the pediatric team determined Jessie’s damaged kidneys and lungs were too weak to continue working on their own. Jessie was started on supportive treatment through dialysis for kidney failure, but a more pressing concern for the critical care team was managing the condition of Jessie’s lungs. The state of his lungs continued to progressively deteriorate, and on March 1 Jessie was placed on a mechanical ventilator, but this intervention was not a long-term solution.
In the early morning of March 2, pediatric surgeon Dr. Sean Skinner led a surgical team in placing a large catheter in a neck vein to connect the ECMO machine to Jessie’s body. A tracheostomy enabling Jessie to breathe was also placed in Jessie’s neck to allow for easier mobilization. ECMO technology reroutes the flow of blood to the lungs to an external perfusion machine, which replicates the job of the lungs by oxygenating blood, removing carbon dioxide gas and replenishing oxygen to healthy blood cells. This process gave Jessie’s lungs a needed break, improving the likelihood that the organs would recover from the damage of the disease and eventually function normally again.
“The thought behind using this modality is it gives time for the lungs to rest,” Day said. “It’s like a big scratch — if you keep beating it, it continues to get bruised. But if you give it rest, it will get better.”
Before pediatric hospitals had access to revolutionary ECMO technology, children whose lungs were as damaged as Jessie’s were often sedated and placed on ventilators, which forcibly oxygenated the lungs and could cause further injury. If these children required support through ECMO, they would remain sedated and paralyzed to prevent problems with the circuit. With ambulatory ECMO, Jessie avoided complete sedation, and was able to eat and drink on his own, start physical therapy right away and stay caught up with school work, all while his lungs were completely out of commission. During several weeks of recovery at KCH, Jessie managed to stand and walk as far as 350 steps to the hospital Welcome Center while on the ECMO machine.
“Before ambulatory ECMO, these kids would be fully sedated in a coma,” Day said. “Today, that’s not the way of thinking.”
Day believes ECMO was a life-saving intervention in Jessie’s case. A team of health care professionals representing more than 14 divisions at Kentucky Children’s Hospital, including pediatric critical care, surgery, nephrology, nursing, physical therapy, perfusion, respiratory therapy, physical therapy, pulmonology, rheumatology, psychiatry, occupational therapy, speech therapy and child life, represented a true team approach to Jessie’s care. UK HealthCare’s transplant division and cardiothoracic surgery program were early adopters of ambulatory ECMO technology, using the machines to support patients waiting for organ transplants. The majority of hospitals conduct ambulatory ECMO as a bridging measure to organ transplantation.
“As a children’s hospital within a larger health care system, we are able to utilize some of the same approaches in a child-friendly manner,” Day said. “We are one of the few children’s hospitals in the nation doing ambulatory ECMO.”
Because of the complexities of caring for children on ECMO and the multiple professions involved in Jessie’s treatment, morning rounds in Jessie’s room lasted as long as 45 minutes. Krysta Clark, one of Jessie’s primary nurses, said morning rounds were essential for ensuring every health care professional was in agreement of Jessie’s goals and therapies for the day. Jessie and his family were also participants in the discussions centered on his care.
“Everyone was so respectful and collaborative,” Clark said. “And I think it’s what’s got him to progress so quickly.”
Jessie was taken off the ECMO machine on March 27 and in early April returned to his beloved farm, his dog, 50 head of cattle and the tractor. Jessie will receive long-term treatment and regular dialysis at KCH, but starting physical therapy while an inpatient, with the help of ECMO, shortened Jessie’s time in the PICU and sped up his overall recovery. Dianna Sharp was grateful the pediatric team utilized ECMO — seeing her son walk around the hospital was a welcome reassurance during a stressful and uncertain time.
“That was very hopeful, and it made me feel good that they were working with him,” Dianna Sharp said of watching Jessie walk while on the ECMO machine. “I love the doctors and the nurses here — you couldn’t ask for better people.”
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