Nieves Jo Ann, Uzark Karen, Rudd Nancy A, Strawn Jennifer, Schmelzer Anne, Dobrolet Nancy
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.
Crit Care Nurse. 2017 Apr;37(2):72-88. doi: 10.4037/ccn2017763.
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.
患有左心发育不全综合征的儿童在过渡期面临严重发病、生长发育迟缓及死亡的高风险，过渡期是指在第一阶段左心发育不全综合征姑息治疗后出院回家至第二阶段手术干预的这段时间。单心室循环生理复杂、脆弱且可能不稳定。多中心倡议已成功实施，以改善过渡期的治疗效果并优化生长发育及生存情况。护理的一个关键重点是对家庭进行全面培训，内容包括在家中监测血氧饱和度、肠内摄入量、体重，以及早期识别表明可能存在心肺或营养失代偿的“警示”症状。从患有左心发育不全综合征的新生儿入住重症监护病房开始，护士就提供重症护理和教育，为家庭进行过渡期家庭护理做好准备。本文介绍了针对家庭护理其患有单心室循环的医学脆弱婴儿的详细护理指南。
