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Summary Background Ventilator-dependent children have complex chronic conditions that put them at risk for acute illness and repeated hospitalizations. Objectives To determine the 12-month incidence of and risk factors for non-elective readmission in children with chronic respiratory failure (CRF) after initiation on home mechanical ventilation (HMV) via tracheostomy. Methods A retrospective cohort study of 109 HMV patients initiated and followed at an university-affiliated children’s hospital between 2003 and 2009. Patient characteristics are presented using descriptive statistics; generalized estimated equations are used to estimate adjusted odds ratios of select predictor variables for readmission. Results The 12-month incidence of non-elective readmission was 40%. Close to half of these readmissions occurred within the first 3 months post-index discharge. Pneumonia and tracheitis were the most common reasons for readmission; 64% were pulmonary- or tracheostomy-related. Most demographic and clinical patient characteristics were not statistically associated with non-elective readmissions. Although, a change in the child’s management within 7 days before discharge was associated readmissions shortly after index discharge. Conclusion Non-elective readmissions of newly initiated pediatric HMV patients were common and likely multifactorial. Many of these readmissions were airway-related, and some may have been potentially preventable.

Infants and children with surgically corrected or palliated congenital heart disease (CHD) are at risk for chronic respiratory failure, necessitating home mechanical ventilation (HMV) via tracheostomy. However, very little data exists on this population or their outcomes. We conducted a retrospective chart review of all children with CHD enrolled in the Childrens Hospital Los Angeles HMV program between 1994 and 2009. Data were collected on type of heart lesion, surgeries performed, number of failed extubations, timing of tracheostomy, mortality, length of time on HMV, weaning status, associated co-morbidities, and Risk Adjusted classification for Congenital Heart Surgery (RACHS-1) category. Thirty-five children were identified; six with single ventricle anatomy, who received palliative procedures. Twenty-three (66%) patients are alive; 8 (23%) living patients have been weaned off HMV. Twelve (34%) patients are deceased. The incidence of mortality for single ventricle patients was 50%, and only one of the surviving children has received final palliation and weaned off HMV. Eight of nine patients (89%) with a RACHS score > or =4 died, and none have been weaned off of HMV. The 5-year survival for all CHD HMV patients was 68%; 90% for patients with RACHS < or =3; and 12% for patients with score > or =4. Children with more complex lesions, as demonstrated by single ventricle physiology or greater RACHS scores, had higher mortality rates and less success weaning off HMV. This case series suggests that caregivers should give serious consideration to the type of heart defect as they advise families considering HMV in children with CHD.