Appeal type: Medical necessity
Decision: Overturned

This is a patient with a medical history significant for premature birth  via emergency Cesarean section at 30-33 weeks' gestation following a motor vehicle accident (the mother was T boned on the driver's side by a drunk driver). He was critically injured in the accident including hypoxic ischemic injury, his mother was injured as well with a fractured pelvis, and she suffered a placental abruption. He remained in the Neonatal Intensive-Care Unit (NICU) /hospital. He now receives peritoneal dialysis (PD) at home 12 hours daily pending a kidney transplant for end stage renal disease from cortical necrosis. His dialysis course has been complicated by peritonitis. He now is on automated cycler peritoneal dialysis. He is continuously fed via nasogastric tube. He frequently pulls out the feeding tube, requiring reinsertion. He has recently been started on growth hormone injections. His care team consists of Nephrology, Neurology, Audiology, ear, nose, and throat (ENT), Cardiology, Gastroenterology, Primary Care, Early Intervention, Rehabilitation (occupational therapy (OT), physical therapy (PT), speech therapy (ST), Swallow), and the dialysis center. He is being evaluated for in-home therapy services. He has been fitted for hearing aids. He lives with his parents. His father works outside of the home daily and sometimes overnight. His mother is on an extended leave from work, but will need to return to work with a typical work day of 8-9 hours because she maintains the health insurance for her son through her job.
Skilled nursing needs include a nasogastric tube care and feedings, PD catheter care and management of dialysis for 12 hours/daily, medication administration, blood pressure monitoring before and after PD, monitoring for seizure activity, maintenance of aspiration precautions, maintenance of strict ins/outs due to fluid shifts from PD, reinsertion of the nasogastric tube because he pulls it out frequently, protection of the PD catheter because he pulls on that as well, and performance of any necessary activities of daily living as the infant is fully dependent. At issue is the medical necessity of skilled shift nursing in home 24 hours a day, seven days a week.
The American Academy of Pediatrics has published guidelines for home care of infants, children, and adolescents with chronic disease: "comprehensive planning should minimize physical and emotional risk to the patient, adverse effects on family members, or unforeseen financial burdens." Further, "the goal of a home health care program for infants, children, or adolescents with chronic conditions is the provision of comprehensive, cost-effective health care within a nurturing home environment that maximizes the capabilities of the individual and minimizes the effects of the disabilities." (1)
This young male infant was near fatally injured in a car crash when his mother was 30+ weeks pregnant. She suffered placental abruption and a fractured pelvis, and he sustained multiple injuries. He remains in end stage renal disease as a result of renal cortical necrosis and awaits transplantation once he has achieved certain milestones. He is unable to orally feed, and is fed continuously via nasogastric tube. As he becomes a more active infant, he pulls out his nasogastric tube and pulls on his PD catheter. He also sustained a hypoxic injury and now suffers from hypoxic ischemic encephalopathy, with a history of seizure and current risk for seizures. His neonatal course was very complicated including peritonitis, and he remains at risk of peritonitis because of his indwelling PD catheter. This infant has suffered numerous complications and remains at great risk of morbidity and even mortality as a result of his prematurity, near fatal injuries, and end stage renal disease. His mother was injured in the accident as well and is still recovering from her pelvic fractures as she anticipates having to go back to work to maintain the family health insurance. This infant must be monitored continuously for complications of his peritoneal dialysis, complications from his prematurity, and ongoing complications from his hypoxic ischemic encephalopathy. He is unable to have standard daycare because of the complexity of his condition and routine needs. His mother is unable to continue providing round-the-clock care because of her own injuries and her need to return to work. While both parents are trained caregivers, at this time it is not reasonable to expect them to provide the continuous care and monitoring needed to maintain health and wellness in this very complicated male infant. He requires round-the-clock shift nursing to provide the necessary routine and specialized care, manage any complications that may arise (self-decannulation of the NG tube, PD complications, seizures, etc), and administer his multitude of medications including injectables. His family is able to assist in his care, but at this time he requires the skills, training, and expertise of shift nursing care 24 hours/day 7 days/week.