Transition To Adulthood

TRANSITIONING TO ADULTHOOD

Many issues need to be addressed as a young person with CCHS begins the transition to adulthood. Some of these are listed below:

Do you know your medical history:
  • Medical condition and past history
  • Genetic data
  • Past surgeries
  • Significant test results
  • Current baseline information
    • Sleep study
    • Echocardiogram
    • EEG
    • CXR, respiratory cultures
  • Any other associated conditions:
    • GI, seizures, heart, eye, orthopedics, Endocrine
  • Respiratory symptoms of CCHS:
    • What do I look like when I am sick?
    • Can I tell if I am getting sick?
    • Normal 02 saturation and CO2 baseline.
    • Ventilator settings
    • Tracheostomy size and type
    • Diaphragm pacer and settings
    • BiPAP and other ventilator devices
    • What treatment do I need when I have respiratory changes?
Who will be living with you?
  • What arrangement will you be making to ensure that you are still breathing when your ventilator malfunctions ?
  • Is there anyone who knows how to respond to your intermittent illness or unexpected events?
Driving?
  • Depth perception issues?
  • Special arrangement needed with transportation?
Does independent living means:
  • Not relying on family help?
  • That you are free to use:
    • Tobacco and Alcohol?
    • Recreational drugs?

Are you aware that unprotected sex might result in pregnancy with a 50% chance of having a CCHS baby?

Most young adults go through these testing behaviors, but can you afford it with CCHS?

Future Health Issues:
  • Who manages your health issues and appointments?  Medical record keeping.
  • Medication refills, pharmacies, vendors, hospitals, emergency rooms?
  • Adult practitioners.
  • Insurance coverage.
  • Need for home nursing service?
  • Health Passport
  • ICE contact (In Case of Emergency Numbers)
  • Medical alert I.D.
Can I survive the night by myself?
  • Do I hear alarms and response appropriately?
  • Who needs to know my CCHS issues outside my family?
  • Is my future living arrangement safe?
What else do I need to do to make it happen?
  • College
  • Financial planning
  • Household skills

The above information was extracted from presentation by Sheila Kun, RN, BSN, BA, MS, Nurse Care Manager, Division of Pediatric Pulmonology, Children’s Hospital Los Angeles entitled SURVIVING THE NIGHT? INDEPENDENT LIVING FOR CCHS YOUNG ADULTS (Video)

Please also see checklist from Childrens Memorial Hospital in Chicago for further information.