摘要
总结1例重度喉软骨软化病合并先天性肢体和面部挛缩、肌张力减退和发育迟缓综合征引起屏气发作新生儿的急救与护理。护理要点:早期识别与干预屏气发作,实施快速反应性抢救;避免屏气发作的诱发因素,实施个体化发展性照顾;重视经口喂养能力的评估,加强经口喂养训练和营养管理;强化围手术期气道管理,预防术后并发症;做好照护者的健康宣教,使其掌握屏气发作时的急救处理措施。经过53 d住院治疗,患儿好转出院。出院1个月随访,患儿屏气发作每天2~4次;出院2个月随访,患儿无屏气发作,仅睡眠期间偶有惊厥发作,可自行缓解。
To summarize the rescue and care of a case of breath-holding attack caused by congenital contractures of limbs and face,hypotonia,and developmental delay(CLIFAHDD)syndrome.Key points of nursing:early identification and intervention of breath-holding attack in CLIFAHDD syndrome,and implementation of rapid reactive rescue;implementing individualized developmental care measures to avoid stimuli that induce breath-holding attack;paying attention to the assessment of oral feeding ability,strengthening the exercise of oral feeding ability and nutrition management;strengthening perioperative diversified airway management to prevent postoperative complications;the monitoring of early neurological and motor system development,and early start of rehabilitation care;doing a good job in health education for caregivers to help them master the first aid treatment and growth and development assessment methods in the event of a breath-holding attack.After 53 days of hospitalization,the patient was discharged.After being discharged from the hospital for more than 1 month,the patient had breath-holding attack 2~4 times a day.After being discharged from the hospital for more than 2 months,the patient had no breath-holding attack,and only had occasional convulsive seizures during sleep,which could be relieved spontaneously.
作者
崔尚卿
郭宏卿
吴金花
霍秋桂
CUI Shangqing;GUO Hongqing;WU Jinhua;HUO Qiugui
出处
《中华护理杂志》
CSCD
北大核心
2024年第7期859-864,共6页
Chinese Journal of Nursing
关键词
罕见病
喉软骨软化病
屏气
基因
突变
新生儿护理
Rare Diseases
Laryngomalacia
Breath Holding
Gene
Mutation
Neonatal Nursing