Appeal type: Medical necessity
Decision: Overturned

Diagnosis: History of heart transplant, hypertrophic cardiomyopathy
Treatment: Private Duty Nursing, 24 hours/day, 7 days/week
The insurer denied the private duty nursing, 24 hours/day, 7 days/week.
The denial is overturned.

The patient is a toddler aged male child with medical history significant for hypertrophic cardiomyopathy, multiple arrests, ECMO (extracorporeal membrane oxygenation) last year, Wolf-Parkinson-White syndrome, systolic and diastolic dysfunction, now status post orthotopic heart transplant complicated by left hemidiaphragmatic paralysis status post plication, multiple strokes (right-sided more than left-sided) with resultant hypoxic injury during pre-transplant LVAD (left ventricular assist device), multifocal seizures on multiple anti-convulsants , worsening spasms, recent hospitalization for pneumonia, tracheobronchomalacia, obstructive sleep apnea with chronic respiratory failure on nocturnal BiPAP (bi-level positive airway pressure), feeding intolerance now with gastrojejunostomy dependence, and global developmental delay. 

Since that time, he has had multiple admissions, mainly for respiratory distress and increased oxygen requirement. He was recently admitted last month because of increasing frequency of known refractory spasms. His anti-convulsant medications were adjusted and increased with improvement. The patient lives with his parents and two siblings. His mother is the primary caregiver, assisting with his care during skilled nursing hours and then independently responsible when nursing leaves. The patient's skilled nursing needs include the following: monitoring of airway and breathing with application of supplemental oxygen as needed, managing BiPAP during sleep making adjustments as needed, performance of airway clearance including suctioning copious secretions, chest physiotherapy, and cough assist, maintenance of gastrojejunostomy including continuous feedings and providing supplemental water flushes, maintenance of reflux precautions, administration of all medications, both routine and emergent, maintenance of seizure precautions, maintenance of safety during periods of spasm, meticulous skin care to maintain integrity and prevent decubiti, bowel and bladder routine, and performance of passive range of motion to prevent contractures and other complications.

The requested private duty nursing, 24 hours/day, 7 days/week are medically necessary.

Prior to his transplant surgery, he was very unstable, with multiple episodes of supraventricular tachycardia secondary to Wolff-Parkinson-White syndrome, bradycardia progressing to asystole requiring prolonged resuscitation and cannulation onto VAECMO (veno-arterial extracorporeal membrane oxygenation) followed by placement of a left ventricular assist device, all complicated by chylous effusions, multiple bouts of SVT (supraventricular tachycardia) refractory to medications, significant airway malacia, serious bacterial infections, and multiple brain infarctions leading to refractory spasms leading to refractory seizures. He was taken for heart transplantation followed by several months in acute rehab. The patient currently receives 16 hours/day of skilled nursing services, and during that time, his mother actively participates in his care assisting the nurses when able. The patient is very fragile, his care is quite complicated, and his needs are many and are round-the-clock. This level of care is not something that a trained layperson caregiver can accomplish alone. This child's mother is actively participating in his care alongside his nurse, but it is unsafe and unreasonable to expect that she can deliver care with the same expertise and clinical acumen as an experienced nurse. The requested private duty nursing hours 24 hours/day, 7 days/week are medically necessary for this child.