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
- detail device characteristics
-show care in medical home (capture details, preferences) --> how care plan is developed -show use in external/less familiar environments -mechanisms for updating information
(any opportunity for parental input… need to follow other examples of inclusion of patient/family input)
Will need to determine potential source (e.g., location within EHR) for this information.
Case 2: 9 yr old with pervasive developmental disorder, seizure disorder, food aversion, struggles with weight gain
- capture food preference (textures) for patient in record -- at primary provider appointment
- show review of preference in Emergency Department (or at Camp or in School)
- contingency plan (i.e., if seizures, consider increasing phenobarbital dose…. may give load IV or enterally)
Case 3: Transition among providers.
March 22 notes: -reviewed project to date -discussed rough drafts of existing story boards (including Emergency Care) -high-level review Care Plan Logical Model (Stephen Chu) -discussed aiming to use existing models (Enrique to facilitate) -transition among providers model in development (Pallavi - lead)
