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A few years ago, Andrew Gelfand, M.D., Chief of Respiratory Medicine at Children's Health℠ and Associate Professor at UT Southwestern, was sitting across from a new mom and explaining how a tracheostomy and long-term ventilation would help her infant son. The baby was born premature, and his underdeveloped lungs struggled for each breath. Dr. Gelfand detailed how a ventilator could help the child breathe and catch up developmentally. The mother agreed to the tracheostomy.
For parents and caregivers, the tracheostomy is only the beginning. Advances in technology and a shift to family-centered care means more children are able to go home with ventilators. Here are three ways we’re empowering caregivers and helping ventilator-dependent children thrive after they leave the hospital:
Dr. Gelfand is also the Chief Medical Officer for Our Children’s House, a pediatric subspecialty hospital. Our Children’s House offers three specialized programs: acute rehabilitation, a feeding program for children who have difficulty eating and drinking by mouth, and a ventilator program to help families transition home. The ventilator program teaches parents the ins-and-outs of tracheostomies, gastrostomy tubes and ventilator equipment.
“Most of our patients in the ventilator program are infants who have never been home,” Dr. Gelfand says. “Not only are many of these families new to parenting, they now have to deal with tracheotomies, gastrostomy tubes and a child who needs care around-the-clock. Basically, we have a few weeks to turn them into not just moms and dads, but nurses and respiratory therapists.”
Our Children’s House offers classroom and hands-on training, where parents learn how to change and clean a tracheostomy, troubleshoot a ventilator and recognize signs of distress. Before heading home, parents must complete two 24-hour periods of caring for their kids on their own.
“If they don't pass, they have to do it again,” Dr. Gelfand says. “It’s intense, but it helps parents feel confident.”
Community clinics and emergency departments (E.D.) can be reluctant to treat ventilator-dependent children — which means they often end up admitted to the hospital. This isn’t just expensive for families, but it also increases the risk of hospital-acquired infections.
We recently launched a telemedicine program that aims to reduce E.D. visits and admissions. Nurse practitioners who specialize in ventilator care are available on weekdays to answer parents’ questions, assess patients and make treatment recommendations over a two-way video connection.
Our physicians, nurses, dietitians, ENT specialists and social workers come to families with ventilator-dependent children in a single outpatient clinic — saving them from traveling across hospital campuses, between floors or even different locations.
“It’s a one-stop shop,” Dr. Gelfand says.
Having specialists in one place also improves collaboration for the care team. “We can talk to each other about what’s going on with the families, trade ideas about how to improve their care, and then write orders that reflect our conclusions,” Dr. Gelfand says.
Our programs have helped hundreds of parents care for their children at home, including the mother who was hesitant about her son’s tracheostomy.
“Her son had the most miraculous outcome. He grew up without any developmental delays, and his trach was removed at age three,” Dr. Gelfand says. “And the mom insisted that I continue to be his provider, even after he was done with the ventilator.”
It’s just one of many success stories that Dr. Gelfand has seen during his 23-year career at Our Children’s House. The dedication of Dr. Gelfand and his team, combined with their innovative care, helped earn Children’s Health’s pediatric pulmonology medicine program a top ranking from U.S. News & World Report in 2018-19.
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