Talk:Essential Information for Children with Special Healthcare Needs

Prior WG meetings on this topic have included:

• Details re: Modeling

• Nutritional Overview

• Storyboard examples

Agenda for 2/2/25:

• provide greater detail for storyboard cases

Case 1: 18 month old ex-25wk preterm infant with h/o bronchopulmonary dysplasia, complex device needs -ventilator dependent with tracheostomy -s/p Nissen and g-tube: gastric-tube feedings: pediasure xxmL bolus q 4hour during day, continuous feeds 10 hours overnight presents to (non-primary) Emergency Department with fever & respiratory distress

-show care in medical home (capture details, preferences) --> how care plan is developed -show use in external/less familiar environments -mechanisms for updating information

Will need to determine potential source (e.g., location within EHR) for this information.

[Case 2: 9 yr old with pervasive developmental disorder, feeding disorder, seizure disorder - has vomiting & diarrhea, dehydrated, worsening seizures]