Despite need for constant care, Beau and his family thrive
Beau Smith was born Dec. 24, 2003, with multiple complex medical complications and several physical genetic anomalies. While he weighed a healthy 6 pounds, 10 ounces, his condition was extremely fragile. He spent most of his first eighteen months in the hospital.
“When Beau was born, nearly every organ was affected. He was really, really sick,” said his mother, Maureen Smith. His medical team included a cardiologist, a gastroenterologist, a geneticist, a nephrologist and a pulmonologist.
Beau’s problems included pulmonary hypoplasia, an enlarged heart, swallowing difficulties, reflux, and renal and gastrointestinal complications. Respiratory distress and a chronic need for oxygen, however, quickly emerged as Beau’s greatest medical concern. Completely oxygen-dependent, Beau began using a negative-pressure ventilator, or “iron lung,” in July 2005 to breathe for him at night so that his body could rest.
Beau’s daily medical needs exceed what two parents can provide alone, making home care a necessity since his discharge from the hospital. Reactive airway disease requires Beau to have regular respiratory treatments to prevent his lungs from closing up, while insulin-dependent diabetes necessitates frequent blood-sugar checks. Unable to eat by mouth, he also receives continuous nutrition through a feeding pump and must be monitored regularly for intestinal obstructions.
“Beau needs constant care to stay alive. It’s disruptive to our family to have him in the hospital, so we need to do everything we can to keep him at home,” said Maureen, who along with her husband Terry has three other children. Finding reliable help, however, proved to be a challenge.
In December 2008, the Smiths turned to the Christiana Care Visiting Nurse Association to meet their need for dependable staffing. VNA private-duty nurses provide one-on-one care for Beau eight hours a day, seven days a week. Nurses administer Beau’s medication, respiratory treatments, tube feedings and insulin care before accompanying him to school and physical, occupational and speech therapy. While away from home, the nurses maintain a watchful eye on Beau’s respiratory status and insulin levels to ensure his well being.
“I rely on Beau’s nurses to make judgment calls at school regarding his oxygen needs and to bring him home if staying at school is medically unsafe,” Maureen says. When Beau is home sick, VNA nurses serve as a resource for medical decisions and relieve some of mom’s caregiver stress. “Having a nurse come to our home makes me feel less isolated, like I am part of the world.”
Amber Palo, LPN, cherishes her role as Beau’s private duty nurse. “I look forward to going to work each day,” she says. “It’s empowering to see how happy and full of life Beau is despite the medical problems inside his body.”
Under VNA’s vigilant care, Beau is growing, gaining weight and making developmental and cognitive gains. He has experienced fewer hospitalizations and enjoys more time at home with his family. In kindergarten, Beau is learning letters, colors and shapes with his peers. He also enjoys playing with cars and puzzles, and listening and dancing to music.
“Beau is thriving under the consistent care of his VNA nurses,” says Maureen. “He would not be alive without someone trained to recognize respiratory distress. I trust his nurses to react quickly and help him when he is having a problem.”
Photo gallery: Despite the need for constant care, Beau and his family thrive
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