儿童脑型肾上腺脑白质营养不良行造血干细胞移植的护理

Nursing care of children with adrenalleukodystrophy undergoing hematopoietic stem cell transplantation

总结2例儿童脑型肾上腺脑白质营养不良行造血干细胞移植的护理体会。针对患儿进行性运动及吞咽功能退化,移植后容易出现营养不良,予建立多学科诊疗团队,及早开展营养风险筛查及评估;严密观察病情变化,及早发现肠移植物抗宿主病、迟发型出血性膀胱炎等并发症;给予患儿及家长心理支持,缓解焦虑情绪;制订个性化康复锻炼及多学科联合随访计划,促进疾病早日康复。经过精心治疗及护理,2例患儿移植后骨髓功能正常,病情稳定出院。

To summarize the nursing experience of 2 children with adrenoleukodystrophy undergoing hematopoietic stem cell transplantation.According to their characteristics of progressive motor and swallowing function deterioration,and malnutrition after hematopoietic stem cell transplantation,a multidisciplinary treatment and nursing team was established to carry out nutritional risk screening and evaluation as soon as possible.We observed the changes of the disease closely,and identified the complications such as intestinal graft-versus-host disease and delayed hemorrhagic cystitis as early as possible,gave psychological support to children and parents to relieve anxiety.Individualized rehabilitation exercise and multidisciplinary joint follow-up plan was made to promote the early recovery of diseases.After careful treatment and nursing,2 children were discharged from hospital with normal bone marrow function.