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A Pediatric Revolution At Home
It is 1980. I am standing in a phone booth on a hill outside the Dairy Queen in Truth or Consequences, New Mexico. My nine-year-old daughter Franny is squeezed inside the booth beside me, clutching my waist, her pigtails undone and falling apart. We are both weeping. I am calling my husband, who is at home more than a hundred and fifty miles away with our other children. We’ve come to the Dairy Queen phone booth from the clinic at Carrie Tingley Hospital just up the road. There, our three-year-old son Nick is lying in a large metal crib, his legs stiffened and straightened in serial casts. The pediatric orthopedist has just told me that the reason Nick can’t walk is because "he has CP; he’s a typical CP kid." I had asked him what "CP" was, and he had looked at me like I was stupid—which I am. This is not a world I know anything about. He repeated, "CP—cerebral palsy." So I’m announcing to my husband, between bursts of tears, that our youngest son has cerebral palsy, whatever that is. We made that difficult journey from our home in Algodones, New Mexico, to T or C, as we call it, many times over the years. Dragging braces, walkers, and toy bags across the endless parking lot; sitting in clinics for hours; losing days of work; missing school; eating cold grilled cheese sandwiches; sometimes booking a cheap motel room if it got too late to drive home. When Nick stayed overnight in the hospital, I had to observe strict visiting hours and was scolded when I arrived early to be at his bedside as he awoke. There were lots of tears. That was then. Nick is now twenty-eight years old. His diagnosis was changed in early adolescence from cerebral palsy to "a progressive neurological disorder of unknown origin." A small man with black hair and thick glasses, Nick is unable to speak or move by himself. Someone must be with him at all times to bathe, feed, and dress him. When he enters a room in his big red power wheelchair, he lights the place up with a silent charisma. With neither gestures nor words, he radiates affection on family, friends, and caretakers. It seems that no matter where we go—a mall, a Pueblo feast, a movie—someone recognizes Nick and stops by for a hug or chat. Nick is a fierce Redskins football fan; a follower of firefighters and other heroes (imaginary or real), with a subtle sense of humor and almost infinite patience and determination. Up to the age of twelve, when he had his first seizure and began to lose physical functioning, he played the drums in his elementary and middle school bands despite being legally blind. (His dad tried to be at practice to hold the music close to his face.) He played the piano, mainly by ear, because he had a hard time seeing the music. He was a strong swimmer, often swimming underwater the length of the pool with me. He won wheelchair races at Special Olympics. And he loved to dress up as Darth Vader and Batman. All of that changed in early adolescence.
During nick’s childhood he was seen by a series of orthopedic surgeons; neurologists; other pediatric specialists; nurses and nurse practitioners; and physical, speech, and occupational therapists. This rotation of health professionals is the norm for kids like Nick. But we have always been there, bringing him home from the hospital in a full-body cast, hosting birthday parties, learning to deal with his seizures, trying out new wheelchairs or computers, modifying our work schedules, teaching him to swim, remembering medicines, helping with homework, finding an accessible summer camp. When our family moved from Albuquerque to a rural village when Nick was one year old, our pediatrician offered to continue to follow Nick and his siblings. But he also encouraged us to visit a nearby rural primary care clinic. As a result, Nick’s primary provider for more than two decades has been Alan Firestone, a family physician at the clinic. Alan and his clinic staff grew to know and understand Nick and his changing diagnoses. We became comfortable at the clinic, dropping in before dinner for a quick consultation or to check blood levels. For twelve years Nick’s schools trusted Alan’s experience and routinely followed his guidance about therapy and nutrition routines. Knowing that Nick’s primary providers were nearby supported our determination to care for him at home—a determination inspired by a pediatric movement called family-centered care that probably prolonged his life. In family-centered care, professionals like Alan Firestone and families like ours build a partnership of trust that helps us make joint decisions. Together we connect the science of medicine with the evidence of daily life. This kind of care returned to my husband and me a sense of control over Nick’s fragile health. Nick had his first grand mal seizure at the age of twelve when he and I were alone, vacationing in a cottage in northern Wisconsin, hours from the nearest medical facility. It was dawn. I was terrified. I immediately called Dr. Firestone, awakening him at home. From a thousand miles away, he calmed me down, walking me through safety procedures for Nick. Then we discussed driving a few hours south to a pediatrician in Green Bay, where Nick’s first anticonvulsant medication was prescribed. The drug did not adequately control the seizures.
Over the next year we tried several different anticonvulsants. Nick’s seizures continued, and he suffered side effects that left him sleepy, confused, dizzy, and unable to do schoolwork or enjoy friends and family. This was scary for everyone—Nick, our family, his teachers and therapists, his friends. Finally, we decided to invite our original pediatrician, along with Dr. Firestone and a developmental pediatrician, to meet with us to discuss the situation. Everyone came to our home on a Saturday for some soup and frank discussion. We sat around the kitchen table, together for the first time, each of us, including Nick and his siblings, weighing in with a different perspective. We agreed on two courses of action: new medications for Nick’s seizures, and visits to an assistive technology clinic for a power wheelchair and computer assessment to deal with his loss of physical functioning. Nick is adopted. It is very likely that had we not adopted him, he would have lived in an institution or foster care, in which case his life would have been far different. Anyone familiar with institutions or the foster care system knows that health care for children with severe disabilities is often inadequate. Two other young men from his Apache tribe, probably related to Nick, have the same unnamed diagnosis. In their childhood and teen years, both were in and out of homes other than their own, on and off the reservation. One died about five years ago; the other is in a group home. Despite deteriorating health, the onset of a seizure disorder, and the loss of many physical functions, Nick graduated from high school and has settled into a quiet routine. He lives with us, does his art, goes to therapies, sometimes hangs out with friends, skis in the winter, travels to Wisconsin each summer, and watches over his six young nieces and nephews. As for where this all began, Carrie Tingley Hospital moved to Albuquerque in the 1980s and is now part of the University of New Mexico. I have not been to T or C in a long time, but my husband has. He assures me that the Dairy Queen is still there, its phone booth long gone.
Polly Arango (polly{at}nmia.com) is cofounder and former executive director of Family Voices, a network of more than 45,000 families and friends whose aim is to improve health and related systems for children and youth with special health needs.
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