About the Patient:

We are seeking a compassionate and experienced overnight nurse or caregiver to provide in-home care for a 13-year-old boy living with Nemaline Myopathy (a condition that causes muscle weakness) and Arthrogryposis Multiplex Congenita (which affects joint flexibility and positioning).

He is ventilator-dependent via a tracheostomy and receives all nutrition and medications through a GJ tube. He uses an eye-gaze computer to communicate and requires a wheelchair for mobility. Due to severe osteoporosis and joint contractures, all care must be performed with an extremely gentle and attentive approach.

Primary Overnight Responsibilities:

• Monitor ventilator and pulse oximeter throughout the night

• Perform tracheostomy suctioning as needed

• Provide tracheostomy cleaning and routine care

• Administer GJ tube feedings and occasional tube medications

• Use cough assist machines to manage respiratory secretions

• Administer respiratory treatments including nebulizers and inhalers

• Assist with bedtime hygiene routine including showering

• Perform repositioning and incontinence care/changes as needed

• Ensure comfort and safety throughout the night

Ideal Candidate Qualifications:

• Experience with tracheostomy and ventilator care (required)

• Familiarity with GJ tube feedings/medications

• Competence in pediatric respiratory care (nebulizers, cough assist, etc.)

• Gentle, patient, and attentive to complex physical needs

• Ability to communicate effectively and respectfully with non-verbal individuals using assistive technology

• Current CPR certification - we offer on-site CPR certification for qualified candidates