ISSN 2097-6046(网络)
ISSN 2096-7446(印刷)
CN 10-1655/R
主管:中国科学技术协会
主办:中华护理学会

中华急危重症护理杂志 ›› 2023, Vol. 4 ›› Issue (5): 444-446.doi: 10.3761/j.issn.2096-7446.2023.05.012

• 重症护理研究 • 上一篇    下一篇

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

周红琴, 陈秀萍, 诸纪华, 张超琅, 陈晓飞, 车月苹   

  1. 310052 杭州市 国家儿童健康与疾病临床医学研究中心/浙江大学医学院附属儿童医院护理部(周红琴,陈秀萍,诸纪华),血液科(张超琅),消化科(陈晓飞),康复科(车月苹)
  • 收稿日期:2022-08-30 出版日期:2023-05-10 发布日期:2023-05-10
  • 通讯作者: 陈秀萍,E-mail:chcxp@zju.edu.cn
  • 作者简介:周红琴:女,本科,副主任护师,护理部副主任,E-mail:zhouhongqin@zju.edu.cn

Nursing care of children with adrenalleukodystrophy undergoing hematopoietic stem cell transplantation

ZHOU Hongqin, CHEN Xiuping, ZHU Jihua, ZHANG Chaolang, CHEN Xiaofei, CHE Yueping   

  • Received:2022-08-30 Online:2023-05-10 Published:2023-05-10

摘要: 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。

关键词: 儿童, 肾上腺脑白质营养不良, 造血干细胞移植, 危重病护理

Abstract: 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.

Key words: Child, Adrenoleukodystrophy, Hematopoietic Stem Cell Transplantation, Critical Care Nursing