title: Interstage Home Monitoring After Newborn First-Stage Palliation for Hypoplastic Left Heart Syndrome: Family Education Strategies.
abstract: Children born with hypoplastic left heart syndrome are at high risk for serious morbidity, growth failure, and mortality during the interstage period, which is the time from discharge home after first-stage hypoplastic left heart syndrome palliation until the second-stage surgical intervention. The single-ventricle circulatory physiology is complex, fragile, and potentially unstable. Multicenter initiatives have been successfully implemented to improve outcomes and optimize growth and survival during the interstage period. A crucial focus of care is the comprehensive family training in the use of home surveillance monitoring of oxygen saturation, enteral intake, weight, and the early recognition of "red flag" symptoms indicating potential cardiopulmonary or nutritional decompensation. Beginning with admission to the intensive care unit of the newborn with hypoplastic left heart syndrome, nurses provide critical care and education to prepare the family for interstage home care. This article presents detailed nursing guidelines for educating families on the home care of their medically fragile infant with single-ventricle circulation.
authors.affiliation: Jo Ann Nieves is a pediatric nurse practitioner in the neonatal high-risk cardiac surgery clinic and the adult congenital heart disease program at the Nicklaus Children's Hospital Heart Program, Miami, Florida. artnieves1@aol.com.|Karen Uzark is a pediatric nurse practitioner in the congenital heart center and the cardiac neurodevelopmental follow-up clinic. She is assistant director of the Michigan Congenital Heart Outcomes Research and Discovery program, Mott's Children's Hospital, University of Michigan, Ann Arbor, Michigan. artnieves1@aol.com.|Nancy A. Rudd is a cardiology nurse practitioner for the Herma Heart Center at Children's Hospital of Wisconsin, Milwaukee, with a dual clinical role within the interstage home monitoring and the adult congenital heart disease program. artnieves1@aol.com.|Jennifer Strawn is a nurse clinician in pediatric cardiology at Children's Hospital & Medical Center, Omaha, Nebraska. She was a member of the pilot team for National Pediatric Cardiology Quality Improvement Collaborative and continues to serve as a key contact and data coordinator. artnieves1@aol.com.|Anne Schmelzer is the nurse coordinator for the neurocardiac developmental program and a cardiology nurse in the high-risk cardiac surgery clinic at Nicklaus Children's Hospital Heart Program, Miami, Florida. artnieves1@aol.com.|Nancy Dobrolet is director of the high-risk cardiac surgery clinic and codirector of the neurocardiac developmental clinic at the Nicklaus Children's Hospital Heart Program, Miami Children's Health System. artnieves1@aol.com.
authors.forename: Jo Ann
authors.initials: JA
authors.lastname: Nieves
authors.affiliation: Jo Ann Nieves is a pediatric nurse practitioner in the neonatal high-risk cardiac surgery clinic and the adult congenital heart disease program at the Nicklaus Children's Hospital Heart Program, Miami, Florida.|Karen Uzark is a pediatric nurse practitioner in the congenital heart center and the cardiac neurodevelopmental follow-up clinic. She is assistant director of the Michigan Congenital Heart Outcomes Research and Discovery program, Mott's Children's Hospital, University of Michigan, Ann Arbor, Michigan.|Nancy A. Rudd is a cardiology nurse practitioner for the Herma Heart Center at Children's Hospital of Wisconsin, Milwaukee, with a dual clinical role within the interstage home monitoring and the adult congenital heart disease program.|Jennifer Strawn is a nurse clinician in pediatric cardiology at Children's Hospital & Medical Center, Omaha, Nebraska. She was a member of the pilot team for National Pediatric Cardiology Quality Improvement Collaborative and continues to serve as a key contact and data coordinator.|Anne Schmelzer is the nurse coordinator for the neurocardiac developmental program and a cardiology nurse in the high-risk cardiac surgery clinic at Nicklaus Children's Hospital Heart Program, Miami, Florida.|Nancy Dobrolet is director of the high-risk cardiac surgery clinic and codirector of the neurocardiac developmental clinic at the Nicklaus Children's Hospital Heart Program, Miami Children's Health System.
authors.forename: Karen
authors.initials: K
authors.lastname: Uzark
authors.affiliation: Jo Ann Nieves is a pediatric nurse practitioner in the neonatal high-risk cardiac surgery clinic and the adult congenital heart disease program at the Nicklaus Children's Hospital Heart Program, Miami, Florida.|Karen Uzark is a pediatric nurse practitioner in the congenital heart center and the cardiac neurodevelopmental follow-up clinic. She is assistant director of the Michigan Congenital Heart Outcomes Research and Discovery program, Mott's Children's Hospital, University of Michigan, Ann Arbor, Michigan.|Nancy A. Rudd is a cardiology nurse practitioner for the Herma Heart Center at Children's Hospital of Wisconsin, Milwaukee, with a dual clinical role within the interstage home monitoring and the adult congenital heart disease program.|Jennifer Strawn is a nurse clinician in pediatric cardiology at Children's Hospital & Medical Center, Omaha, Nebraska. She was a member of the pilot team for National Pediatric Cardiology Quality Improvement Collaborative and continues to serve as a key contact and data coordinator.|Anne Schmelzer is the nurse coordinator for the neurocardiac developmental program and a cardiology nurse in the high-risk cardiac surgery clinic at Nicklaus Children's Hospital Heart Program, Miami, Florida.|Nancy Dobrolet is director of the high-risk cardiac surgery clinic and codirector of the neurocardiac developmental clinic at the Nicklaus Children's Hospital Heart Program, Miami Children's Health System.
authors.forename: Nancy A
authors.initials: NA
authors.lastname: Rudd
authors.affiliation: Jo Ann Nieves is a pediatric nurse practitioner in the neonatal high-risk cardiac surgery clinic and the adult congenital heart disease program at the Nicklaus Children's Hospital Heart Program, Miami, Florida.|Karen Uzark is a pediatric nurse practitioner in the congenital heart center and the cardiac neurodevelopmental follow-up clinic. She is assistant director of the Michigan Congenital Heart Outcomes Research and Discovery program, Mott's Children's Hospital, University of Michigan, Ann Arbor, Michigan.|Nancy A. Rudd is a cardiology nurse practitioner for the Herma Heart Center at Children's Hospital of Wisconsin, Milwaukee, with a dual clinical role within the interstage home monitoring and the adult congenital heart disease program.|Jennifer Strawn is a nurse clinician in pediatric cardiology at Children's Hospital & Medical Center, Omaha, Nebraska. She was a member of the pilot team for National Pediatric Cardiology Quality Improvement Collaborative and continues to serve as a key contact and data coordinator.|Anne Schmelzer is the nurse coordinator for the neurocardiac developmental program and a cardiology nurse in the high-risk cardiac surgery clinic at Nicklaus Children's Hospital Heart Program, Miami, Florida.|Nancy Dobrolet is director of the high-risk cardiac surgery clinic and codirector of the neurocardiac developmental clinic at the Nicklaus Children's Hospital Heart Program, Miami Children's Health System.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Strawn
authors.affiliation: Jo Ann Nieves is a pediatric nurse practitioner in the neonatal high-risk cardiac surgery clinic and the adult congenital heart disease program at the Nicklaus Children's Hospital Heart Program, Miami, Florida.|Karen Uzark is a pediatric nurse practitioner in the congenital heart center and the cardiac neurodevelopmental follow-up clinic. She is assistant director of the Michigan Congenital Heart Outcomes Research and Discovery program, Mott's Children's Hospital, University of Michigan, Ann Arbor, Michigan.|Nancy A. Rudd is a cardiology nurse practitioner for the Herma Heart Center at Children's Hospital of Wisconsin, Milwaukee, with a dual clinical role within the interstage home monitoring and the adult congenital heart disease program.|Jennifer Strawn is a nurse clinician in pediatric cardiology at Children's Hospital & Medical Center, Omaha, Nebraska. She was a member of the pilot team for National Pediatric Cardiology Quality Improvement Collaborative and continues to serve as a key contact and data coordinator.|Anne Schmelzer is the nurse coordinator for the neurocardiac developmental program and a cardiology nurse in the high-risk cardiac surgery clinic at Nicklaus Children's Hospital Heart Program, Miami, Florida.|Nancy Dobrolet is director of the high-risk cardiac surgery clinic and codirector of the neurocardiac developmental clinic at the Nicklaus Children's Hospital Heart Program, Miami Children's Health System.
authors.forename: Anne
authors.initials: A
authors.lastname: Schmelzer
authors.affiliation: Jo Ann Nieves is a pediatric nurse practitioner in the neonatal high-risk cardiac surgery clinic and the adult congenital heart disease program at the Nicklaus Children's Hospital Heart Program, Miami, Florida.|Karen Uzark is a pediatric nurse practitioner in the congenital heart center and the cardiac neurodevelopmental follow-up clinic. She is assistant director of the Michigan Congenital Heart Outcomes Research and Discovery program, Mott's Children's Hospital, University of Michigan, Ann Arbor, Michigan.|Nancy A. Rudd is a cardiology nurse practitioner for the Herma Heart Center at Children's Hospital of Wisconsin, Milwaukee, with a dual clinical role within the interstage home monitoring and the adult congenital heart disease program.|Jennifer Strawn is a nurse clinician in pediatric cardiology at Children's Hospital & Medical Center, Omaha, Nebraska. She was a member of the pilot team for National Pediatric Cardiology Quality Improvement Collaborative and continues to serve as a key contact and data coordinator.|Anne Schmelzer is the nurse coordinator for the neurocardiac developmental program and a cardiology nurse in the high-risk cardiac surgery clinic at Nicklaus Children's Hospital Heart Program, Miami, Florida.|Nancy Dobrolet is director of the high-risk cardiac surgery clinic and codirector of the neurocardiac developmental clinic at the Nicklaus Children's Hospital Heart Program, Miami Children's Health System.
authors.forename: Nancy
authors.initials: N
authors.lastname: Dobrolet
mesh_terms: D000328:Adult; D017028:Caregivers / Q000193:education*; D003422:Critical Care / Q000379:methods*; D005190:Family; D005260:Female; D017408:Guidelines as Topic; D006699:Home Care Services / Q000458:organization & administration*; D006801:Humans; D018636:Hypoplastic Left Heart Syndrome / Q000451:nursing*; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D018670:Monitoring, Ambulatory / Q000379:methods*; D024802:Nurse's Role; D012189:Retrospective Studies