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. Author manuscript; available in PMC: 2023 Feb 1.
Published in final edited form as: J Pediatr. 2021 Oct 6;241:48–53.e1. doi: 10.1016/j.jpeds.2021.09.055

Table 3.

Deceased subjects

Patient Age Group at death (years) Location Cause Home respiratory support at time of death Selected diagnoses at time of death Medications
1 5-14 PICU Septic shock prior to admission (Withdrawal of care) Trach collar (21%) Cerebral palsy, HIE, seizures, CLD, OSA, and laryngotracheomalacia Levetiracetam, baclofen, fluticasone, albuterol, ipratropium, glycopyrrolate, lansoprazole, erythromycin
2 <1 Car Arrest NC oxygen CLD Chlorothiazide, spironolactone, ranitidine
3 1-4 Home with hospice Shunt malfunction NC oxygen Hydrocephalus with shunt, CLD Fluticasone, albuterol, glycopyrrolate, lansoprazole, erythromycin, levetiracetam
4 5-14 Inpatient floor Head trauma (Withdrawal of care) Room air Chromosomal abnormality, ASD, VSD, pHTN with stenting of pulmonary vein, CLD Fluticasone, montelukast, sildenafil, bosentan, clopidogrel, acetylsalicylic acid
5 1-4 Unknown Unknown Room air pHTN, hydrocephalus with shunt, HSV encephalitis, seizure disorder, cortical blindness, CLD Fluticasone, albuterol, erythromycin, levetiracetam, phenobarbital, ranitidine, valacyclovir
6 1-4 Home Arrest Ventilator CLD Fluticasone, albuterol, ipratropium, montelukast, chlorothiazide, spironolactone, lansoprazole
7 <1 ED Cardiac arrest (home) NC oxygen CLD Ranitidine
8 1-4 Home with hospice Multi-organ progressive disease (Withdrawal of care) NC oxygen HIE, hydrocephalus with shunt, TPN dependence, chronic pancreatitis, seizures, CLD, OSA
9 1-4 ED Respiratory failure/cardiac arrest (home) Ventilator CLD, Pierre-Robin sequence, severe trismus Beclomethasone, levalbuterol, ranitidine
10 1-4 PICU Hydrocephalus progression (Withdrawal of care) NC oxygen Hydrocephalus with shunt, seizure disorder, CLD Beclomethasone, albuterol, chlorothiazide, levetiracetam, topiramate, ranitidine
11 1-4 Inpatient floor Respiratory failure; multi-organ progressive disease (Withdrawal of care) Ventilator Diffuse cystic PVL & hydrocephalus s/p ventriculostomy, seizures, CLD, PDA, right atrial thrombus Baclofen, diazepam, gabapentin, levetiracetam, phenobarbital, topiramate, fluticasone, levalbuterol
12 1-4 ED Arrest (home) Room air CLD, G6PD with hyperbilirubinemia, seizure disorder Fluticasone, albuterol, levetiracetam, phenobarbital, erythromycin, cyproheptadine, omeprazole
13 1-4 PICU Trach dislodgement (Home) (Withdrawal of care) Ventilator Hydrocephalus, CLD, with trach/vent, pHTN, adrenal insufficiency Budesonide, levalbuterol, sildenafil, spironolactone, chlorothiazide, azithromycin