16004
Colby. Family in search of a PAL to develop, submit, and manage a Forward Health PA and skilled private duty nurses to care for a medically complex child in his home school environment while his parents work. The hours will primarily be weekdays, though it may develop into needs for evening/night and/or weekend hours in the future.
Eli, 11 y/o boy with a complex seizure disorder resulting in intractable epilepsy (related to his condition of Lennox Gastaut Syndrome). He is on a ketogenic diet and requires rescue seizure medications intermittently. He has central apnea and intermittent oxygen dependence; with risk for exacerbation when seizure medication increased or rescue medications given. In addition, he has impaired airway clearance, moderate asthma, and chronic bronchitis, which has led to episodes of respiratory failure that can come on very quickly, especially with the onset of illness. He requires skilled nursing assessments to determine the need for escalated respiratory support including chest physiotherapy, cough assist, suction nebulizer treatments, medications and titrating oxygen in the home. In addition, to recognize when he may be in need of treatment changes, medical attention or hospitalization. Eli also has a complex feeding routine due to the ketogenic diet, intermittent electrolyte imbalances, and dysphagia which requires close assessment for safe feeding. Eli is a very sweet boy with developmental delays and wheelchair dependence: who loves to participate in school and fun activities when well. Goal of the family is for Eli to be able to be cared for at home as much as possible and remain out of the hospital.
