先天性中枢性低通气综合征患儿的护理研究

The Nursing of congenital central hypoventilation syndrome

目的探讨先天性中枢性低通气综合征患儿的有效护理措施。方法回顾性分析2013年4月至2014年6月我院新生儿重症监护中心收治的2例先天性中枢性低通气综合征患儿的临床资料和护理方法及结果,总结护理经验。结果 2例患儿经无创通气治疗,1例3个月大时顺利出院,继续家庭无创通气,1例1个月时出院,家庭监护治疗,1例随访至生后3个月,1例随访至生后7个月,均生长发育良好。2例患儿家长通过责任护士2-3次的宣教指导后均能在出院前掌握护理患儿的知识要点与技能。结论针对患儿以呼吸困难起病,呈现明显睡眠时通气障碍,反复撤机困难等特点,应加强监测生命体征、胃食管反流的护理、预防呼吸机相关性肺炎、无创双水平正压通气(Bi-PAP)的护理、出院指导、建立随访系统的个性化护理,达到最佳治疗效果,促进患儿早日康复,提高患儿的生活质量。

Objective The study was aimed to explore the the effective nursing care measures for congenital central hypoventilation syndrome（CCHS）. Methods Clinical data,nursing methods and results of 2 babies suffering with CCHS from Aprial, 2013 to June, 2014 were surveryed retrospectively. The nursing experience was summarized. Results Two infants were supported by non-invasive biphasic positive airway pressure（Bi PAP）, one infant was discharged home at3 months of age with non-invasive Bi PAP, and one infant was discharged home at 1 month of age. Both of them were monitored and treated at home, and showed normal development. Parents of the two babies could master the main points of care knowledge and skills after charge nurses＇ guiding mission before discharge. Conclusion For children with difficulty in breathing, significant ventilation disorder in sleep and evacuation ventilator difficulty, monitoring of vital signs, gastroesophageal reflux care, prevention of ventilator- associated pneumonia, Bi PAP care, discharge guidance and personalized care system based on follow-up should be enhanced to achieve the best therapeutic effect,and to promote the rehabilitation and imuprove the life quality of the infants.