A nurse case manager at Ft Polk reached out to Alex to let her know that K and his family were moving to Colorado the following week. had K a history of medication-resistant seizures so severe that he was eventually placed in a medically-induced coma and received a vagus nerve stimulator. Genetic testing revealed a chronic neurodegenerative condition.

Alex coordinated specialty care with the following specialists: Neurology, Genetics, Ophthalmology, Cardiology, Audiology, Developmental Pediatrics, Hepatology, Hematology, and Palliative Care. Alex arranged for home health care which was difficult since family lived outside city limits.

She strongly advocated and coordinated with TRICARE and Medicaid for the patient to receive the following durable medical equipment: wheelchair, hospital bed, transfer device, assisted shower device, toilet chair, stair chair, nasogastric enteral feeding supplies, incontinence supplies, adaptive car seat, weight scale, supplemental oxygen, ventilator, and an ear pulse oximeter as his peripheral circulation deteriorated with his condition.

The patient had multiple emergency department visits resulting in Pediatric ICU admissions with an abrupt decline in clinical stability and overall health very soon after arriving in Colorado. Alex worked closely with the hospitals to coordinate discharge care.

Six weeks after arriving in Colorado, Palliative Care notified the mother that the patient's condition would only worsen and the ultimate goal would be to optimize the patient's quality of life and reduce suffering. Mother refused to accept this. She called Alex almost daily and sometimes multiple times daily with questions, with need for guidance, for a listening ear as she processed her son's deterioration, as well as for support as there were four other children and as well as a concurrent pregnancy.

Throughout the year after arriving in Colorado, the hospital notified mother that the patient was at very high risk for sudden and unrecoverable decompensation, and discussed Do Not Resuscitate Orders and Hospice, but mother declined. She continued to believe her child would live much longer.

Alex continued to provide guidance, support, and care coordination according to the mother's wishes as the patient continued to decline. The patient died 9 days before his birthday. Alex continued to provide emotional support for mother and coordinated the discontinuation of medical services.

Providing this level of prolonged, intensive support for a patient and his family requires tremendous mental and emotional strength. Alex demonstrated this throughout.