摘要
目的 探讨一例脊髓性肌萎缩症(SMA)Ⅱ型合并重度脊柱侧弯患儿行Halo头环牵引矫正的牵引期护理要点,以降低并发症风险,促进患儿舒适康复。方法 对1例11岁SMA Ⅱ型合并重度脊柱侧弯、呼吸肌无力、吞咽障碍、营养不良的患儿,采用高级健康评估、循证护理联合MDT多学科协作模式,明确躯体移动障碍、清理呼吸道无效、营养失调、焦虑等主要护理问题,实施针对性干预,头环牵引重量在患儿可耐受的范围内逐日递增,出院已增至18 kg(约体重1/2),咳痰辅助排痰机睡前及清晨辅助排痰,夜间呼吸机每日辅助下患儿能每日保证8小时以上的睡眠。结果 患儿牵引期间未发生压疮、呼吸衰竭、严重感染等并发症,血氧饱和度由干预前的91%~93%提升并稳定在95%~98%。胃造瘘定时定量喂养,每日保证至少1000热卡的摄入量,每日蛋白质热量占比25%以上,患儿体脂从78%降至63%。经过4周头环牵引及每日3-4次四肢主动被动关节活动,患儿自理能力评分由20分提升至27分,顺利出院并返校学习。结论 对SMAⅡ型合并重度脊柱侧弯行Halo头环牵引的患儿,开展个性化多学科协作的全程护理,可有效预防并发症,改善患儿运动功能状态及生活质量,为同类罕见病重症患儿护理提供参考。
关键词: 脊髓性肌萎缩症;SMAⅡ型;脊柱侧弯;Halo头环牵引
Abstract
Objective To explore the key points of nursing care during the traction period of a child with spinal muscular atrophy (SMA) type II and severe scoliosis undergoing Halo head ring traction correction, in order to reduce the risk of complications and promote the child’s comfortable recovery. Methods An 11-year-old child with SMA type II, severe scoliosis, respiratory muscle weakness, dysphagia, and malnutrition was treated using advanced health assessment, evidence-based nursing, and a multidisciplinary team (MDT) approach. The main nursing problems, such as impaired mobility, ineffective airway clearance, nutritional imbalance, and anxiety, were identified, and targeted interventions were implemented. The weight of the head ring traction was gradually increased daily within the child’s tolerance range, reaching 18 kg (approximately half of body weight) at discharge. A sputum-assisted expectoration machine was used before bedtime and in the morning to assist with expectoration. With nighttime mechanical ventilation, the child was able to maintain more than 8 hours of sleep daily. Results No complications such as pressure sores, respiratory failure, or severe infection occurred during the traction period. Blood oxygen saturation improved from 91%-93% before intervention and stabilized at 95%-98%. Gastrostomy was used for regular and quantitative feeding, ensuring a daily intake of at least 1000 calories, with protein accounting for more than 25% of daily calories. The child’s body fat decreased from 78% to 63%. After 4 weeks of head-ring traction and 3-4 daily active and passive joint exercises of the limbs, the child’s self-care ability score improved from 20 to 27, and the child was successfully discharged and returned to school. Conclusion Personalized, multidisciplinary collaborative nursing care for children with SMA type II and severe scoliosis undergoing Halo head-ring traction can effectively prevent complications, improve motor function and quality of life, and provide a reference for the nursing care of children with similar rare and severe diseases.
Key words: Spinal muscular atrophy; SMA type II; Scoliosis; Halo head-ring traction
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