Beckwith-Wiedemann Syndrome — Discharge and Case Management — Clinical Pathway: ICU and Inpatient

Beckwith-Wiedemann Syndrome Clinical Pathway — N/IICU

Discharge and Case Management

  • Provider:
    • Establish home regimen/target discharge date
  • Case Manager:
    • Facilitate provider orders to home care vendors
    • Confirm delivery details with family
    • Assure provision of prescription and home care supplies per patient’s
      care plan
  • Any concern for BWS:
    • Consult Genetics
    • Obtain baseline AFP level and baseline abdominal ultrasound
  • Once Genetics consulted:
    • Safety fast – every BWS child before discharge
    • Sleep study – once weaned off of FiO2 or before tongue debulking surgery
  • Caregiver education per patient’s specific medical needs
  • Follow-up Appointments