Last night, 15-year-old Adam Carpenter-Dolce slept like a baby. It was the first time in his life the teenager wasn’t connected to a ventilator. “I felt like a new person,” said Adam, raising his arms in a victory salute.
Adam was born in Denver, Colo., with omphalocele, a rare birth defect in which his intestine and other abdominal organs were outside his body. Following 10 months in a pediatric intensive care unit, Adam came home with his mother, Stacie. Adam’s breathing was dependent on a ventilator and tracheostomy — a duo that became a constant presence.
Life has been full of challenges for Adam, including becoming hearing impaired at age four. Stacie had to accompany Adam to Kindergarten and monitor his medical devices. “It’s been hard,” said the eighth-grader who loves sports, video games and the Twilight movies. Despite being hampered by a vent and trach, Adam is not self-conscious and makes friends easily. “I’m a very fun person to hang out with,” said Adam, flashing his bright smile.
Two years ago, Adam and his family moved to Omaha, Neb. Walking to classes at Monroe Junior High is an arduous task for Adam. “I usually arrive late and out of breath,” he said. Shooting basketball hoops causes his asthma to flare. “I just want to be a normal kid,” said Adam, who has endured close to 50 surgeries.
In April 2011, pneumonia zapped Adam’s stamina. His pediatrician, Dr. John Andresen with Children’s Physicians, recommended the teenager come to Madonna Rehabilitation Hospital in Lincoln to rebuild strength. Adam was hesitant about transferring until Dr. Amy Nordness, pediatric program manager, shared photos of The Alexis Verzal Children’s Rehabilitation Hospital at Madonna that specializes in children’s rehabilitation. “It looked like a cool place for kids,” said Adam, who arrived at the hospital Sept. 26.
Adam’s goal was to be trach-free before starting high school. The initial step was weaning Adam from the vent. “Despite his age, Adam is very knowledgeable about his pulmonary condition,” said Dana Jackson, respiratory therapist. Adam’s respiratory and nursing teams successfully weaned Adam from the vent in two days. “Adam learned a whole new way of doing things — from coughing to taking his respiratory treatments,” said Jackson. He tackled every challenge.
Years of ventilator use never allowed Adam’s diaphragm to fully develop. Occupational Therapist Lynn Dolezal incorporated exercises to target those weak muscles and worked toward independent breathing. “I encouraged Adam to blow bubbles, a kazoo and sing,” said Dolezal. Adam’s speech language team also created exercises to retrain his respiratory muscles and improve his breathing mechanics. Adam gradually learned to recognize how it felt to use his diaphragm correctly.
Adam has returned to his home in Omaha and is optimistic about an evaluation to determine his trach removal. Breathing is easier for the teenager who now walks six minutes without getting winded. “I’m definitely stronger.” said Adam. “Madonna has been an awesome place