Transitioning children using home invasive mechanical ventilation from hospital to home: Discharge criteria, disparities, and ethical considerations.

Children using home invasive mechanical ventilation (HIMV), a valuable therapeutic option for chronic respiratory failure, constitute a growing population. Transitioning children using HIMV from hospital to home care is a complex process that requires a multidisciplinary approach involving healthcare professionals, caregivers, and community resources. Medical stability, caregiver competence, and home environment suitability are essential factors in determining discharge readiness. Caregiver education and training play a pivotal role in ensuring safe and effective home care. Simulation training and staged education progression are effective strategies for equipping caregivers with necessary skills. Resource limitations, inadequate home nursing support, and disparities in available community resources are common obstacles to successful HIMV discharge. International perspectives shed light on diverse healthcare systems and challenges faced by caregivers worldwide. While standardizing guidelines for HIMV discharge may be complex, collaboration among healthcare providers and the development of evidence-based regional guidelines can improve outcomes for children using HIMV and their caregivers. This review seeks to synthesize literature, provide expert guidance based on experience, and highlight components to safely discharge children using HIMV. It further assesses disparities and divergences within regional and international healthcare systems while addressing relevant ethical considerations.

Respiratory culture growth and 3-years lung health outcomes in children with bronchopulmonary dysplasia and tracheostomies.

BACKGROUND: While bacteria identification on respiratory cultures is associated with poor short-term outcomes in children with bronchopulmonary dysplasia (BPD) and tracheostomies, the influence on longer-term respiratory support needs remains unknown. OBJECTIVE: To determine if respiratory culture growth of pathogenic organisms is associated with ongoing need for respiratory support, decannulation, and death at 3 years posttracheostomy placement in children with BPD and tracheostomies. METHODS: This single center, retrospective cohort study included infants and children with BPD and tracheostomies placed 2010-2018 and ≥1 respiratory culture obtained in 36 months posttracheostomy. Primary predictor was any pathogen identified on respiratory culture. Additional predictors were any Pseudomonas aeruginosa and chronic P. aeruginosa identification. Outcomes included continued use of respiratory support (e.g., oxygen, positive pressure), decannulation, and death at 3 years posttracheostomy. We used Poisson regression models to examine the relationship between respiratory organisms and outcomes, controlling for patient-level covariates and within-patient clustering. RESULTS: Among 170 children, 59.4% had a pathogen identified, 28.8% ever had P. aeruginosa, and 3.5% had chronic P. aeruginosa. At 3 years, 33.1% of alive children required ongoing respiratory support and 24.8% achieved decannulation; 18.9% were deceased. In adjusted analysis, any pathogen and P. aeruginosa were not associated with ongoing respiratory support or mortality. However, P. aeruginosa was associated with decreased decannulation probability (adjusted risk ratio 0.48, 95% CI 0.23-0.98). Chronic P. aeruginosa was associated with lower survival probability. CONCLUSION: Our findings suggest that respiratory pathogens including P. aeruginosa may not promote long-term respiratory dysfunction, but identification of P. aeruginosa may delay decannulation.

Feeding Disorders in Children With Tracheostomy Tubes.

BACKGROUND: We aimed to describe feeding dysfunction in a group of children with tracheostomy. METHODS: Single-center, retrospective chart review of all children with a tracheostomy who were evaluated by our interdisciplinary feeding program. Demographic and diagnostic data, nutrition variables, acceptance of food consistencies, as well as 2 validated psychometric instruments for assessment of feeding dysfunction were analyzed. RESULTS: Thirteen tracheostomy-dependent children (5/13; 38% ventilator dependent) were evaluated at a median age of 51 months (interquartile range [IQR], 26-69). The majority of children (8/13; 62%) underwent evaluation after decannulation. Four children (30%) had a history of a cuffed tracheostomy tube. Eleven children (85%) used a speaking valve prior to decannulation, only 2 of whom started before initial discharge with a tracheostomy. Children with a tracheostomy had low-median weight- and height-for-age z-scores (-1.27 and -1.73, respectively), with normal-median body mass index (BMI)-for-age z-score (0.175). Children received 75% of feedings via tube feeding (IQR, 13%-97%). Compared with other children with feeding disorders, children with tracheostomy had delays in initial acceptance of most food textures and general diet, and the Mealtime Behavior Questionnaire showed significantly worse overall scores (P = .01), and the About Your Child's Eating survey showed significantly higher parental perception of resistance to eating (P = .0001). CONCLUSION: Requirement of enteral nutrition, poor oral-feeding skills, chronic malnutrition, and worse mealtime behaviors are associated with tracheostomy. A history of ventilator dependence, cuffed tracheostomy, and inpatient speaking valve-use were infrequently associated with interdisciplinary feeding-program evaluation.

Polysomnography Provides Useful Clinical Information in the Liberation from Respiratory Technology: A Retrospective Review.

Background The prevalence of respiratory-technology dependent children is increasing although for most children the goal is liberation from technology. Liberation from home mechanical ventilation (HMV) and decannulation strategies vary due to the lack of clinical practice standards. The primary objective of this study was to describe our practice utilizing a polysomnography (PSG) in the liberation from respiratory-technology process. Methods Retrospective study of tracheostomized children with and without HMV who underwent an evaluation for decannulation between January 2006 and June 2016. Patient demographics, indication for tracheostomy, indication for PSG, PSG results and interventions performed after the PSG were collected. RESULTS: We identified 153 decannulation attempts in 148 children. Ninety-nine children had a tracheostomy only and 49 children had a tracheostomy with HMV. There were 190 PSGs performed. Almost two-thirds of the children (N = 92) had at least one PSG, 37 children (25%) had two and 19 children (13%) had more than 2 PSGs. Children with tracheostomy and HMV had more PSGs compared to children with tracheostomy only. PSGs were performed at four points: (1) prior to tracheostomy placement (N = 23); (2) to titrate HMV (N = 19); (3) off-HMV support (N = 43); and with a capped tracheostomy (N = 101). Most of the off-HMV PSGs (N = 39) were favorable for discontinuing HMV. About two-thirds of the capped PSGs (N = 73) were favorable for decannulation; of the unfavorable capped PSGs (N = 28), thirteen required airway surgeries following the unfavorable PSG. CONCLUSION: : Overnight PSG provides useful information to the liberation process, particularly when determining readiness for discontinuing HMV and decannulation.

Liberation from home mechanical ventilation and decannulation in children.

BACKGROUND: The prevalence of children requiring outpatient invasive long-term mechanical ventilation is increasing. For some children, liberation from home mechanical ventilation (HMV) and decannulation is the desired outcome. This study describes our experience liberating tracheostomy and HMV (T-HMV) dependent children from respiratory technologies. METHODS: We reviewed charts of T-HMV dependent children who were cared for at our institution and decannulated between July 1999 and December 2011. Patient characteristics, diagnoses, and important steps leading to decannulation were recorded. RESULTS: Forty-six children achieved HMV independence and decannulation. The most common indications for T-HMV were lower airway and parenchymal lung disease. The median ages at tracheotomy, initiation of HMV, initiation of tracheostomy collar (TC) trials, HMV independence, and decannulation were 3.5, 6.0, 12.0, 25.5, and 40.5 months, respectively. Twenty-five children (54%) skipped either using a speaking valve, tracheostomy capping, or both without increased likelihood of recannulation. (P = 0.03). Common procedures prior to decannulation were airway surgery, bronchoscopy, and polysomnography (n = 30, 46, and 46 children, respectively). A median of 9.5 clinic visits and 5 hospitalizations occurred from initial hospital discharge to just prior to decannulation. HMV was primarily weaned as an outpatient. CONCLUSION: Liberation from respiratory technology is a complex, multi-step process that can be accomplished in medically complex children with varying underlying disease processes at relatively young ages. Five major steps (tracheotomy, initiation of HMV, initiation of TC trials, HMV independence, and decannulation) performed in conjunction with clinic visits, procedures, and home nursing support were integral in the successful decannulation process. Pediatr Pulmonol. 2016;51:838-849. © 2016 Wiley Periodicals, Inc.

Pleural effusion in a child with a ventriculoperitoneal shunt and congenital heart disease.

We present the unique case of an 8 month old infant who required extracorporeal membrane oxygenation (ECMO) after neonatal repair of tetralogy of Fallot. While on ECMO, he developed grade 3 intraventricular hemorrhage resulting in hydrocephalus requiring ventriculoperitoneal (VP) shunt placement at 5 months of life. He presented to cardiology clinic with a 2-month history of poor weight gain, tachypnea, and grunting and was found to have a large right sided pleural effusion. This was proven to be cerebrospinal fluid (CSF) accumulation secondary to poor peritoneal absorption with subsequent extravasation of CSF into the thoracic cavity via a diaphragmatic defect. After diaphragm repair, worsening ascites from peritoneal malabsorption led to shunt externalization and ultimate conversion to a ventriculoatrial (VA) shunt. This is the second reported case of VA shunt placement in a child with congenital heart disease and highlights the need to consider CSF extravasation as the cause of pleural effusions in children with VP shunts.