The Infant Home Ventilator Program at Children's Mercy Hospitals and Clinics is a unique full-service program that enables infants less than two years of age who require tracheotomy and long-term ventilation to be transitioned to home for extended care. By creating an outpatient medical home for infants with complex technology needs, the team has been successful in enabling ventilated infants to be at home with their families while working towards the ultimate goal of freedom from ventilator support andeventual tracheal decannulation, according to Linda Gratny, MD, Director of the Home Ventilator Program.
Children's Mercy initiated the program in 2005 in response to an increased number of referrals of infants with complex multi-system problems and a need for prolonged ventilatory support. The infant home ventilator team consists of three neonatologists, an otolaryngologist, a pulmonologist, a registered nurse coordinator and a social worker. The team works closely with other pediatric subspecialists, including cardiologists, neurologists, developmental pediatricians and speech, occupational and physical therapists.
"We have a sizeable program focusing on infants," says Dr. Gratny. "These babies are often considered too sick or too medically fragile to be at home, so they tend to stay in the hospital until they are much older. However, if the infants can be stabilized for the home environment, there is a lot to be gained from being with their families and not being separated for months in a hospital setting."
About fifty percent of the home ventilated infants were preterm with complications of chronic lung disease or airway anomalies, while the other half are term infants who have multi-organ problems including complex cardiac disease, renal or gastrointestinal anomalies or other problems requiring long-term ventilation to bridge support until further palliation can be accomplished.
Infants who require long-term ventilation become potential candidates for the home vent program if they are stable on less than forty % oxygen, have demonstrated stable respiratory support needs for at least two weeks, are not anticipated to wean from ventilator support within four to six weeks and do not have other organ system instability requiring inpatient hospital intervention.
In addition, a stable home environment, effective support systems and home nursing support must be in place to meet criteria for home discharge. Prior to discharge, the home vent team works closely with the inpatient teams to prepare for and coordinate the transition to home. After discharge, the infant home vent team provides the medical home for these infants and provides 24-hour a day phone access to one of the team physicians for patient care related questions. The patients are seen regularly in a coordinated multi-disciplinary outpatient clinic on a weekly/bi-weekly or monthly basis depending on the acuity of their medical problems.
Once identified as a candidate for home ventilation, the medically complex infants are discharged to home from either the Intensive Care Nursery or the Pediatric Intensive Care Unit. Family preparation includes an extensive training period and multiple practice sessions with the equipment, plus coordination with the home nursing companies, the durable medical equipment companies and the primary care physicians to ensure continuity of care.
"These are young children with very complex disease and potentially reversible or palliative disease processes or illnesses," says Dr. Gratny.
"We're finding home ventilation to be a useful adjunct in supporting some infants with complex medical problems until they recover or can have their underlying problems palliated."
Areas of investigation related to the medical needs of this complex group of patients include developing consistent approaches for timing, methods and frequency of airway evaluations, developing a consistent approach to evaluation for decannulation, and ongoing outcomes studies.
Dr. Gratny welcomes calls from other providers for similar high-risk infants to share experiences and to discuss challenges in the care of this unique group of infants. To reach Dr. Gratny, call 816-234-3591.