Emergency Profile Generator

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Patient Information

Patient Name

Date of Birth

PHOX2B Genotype

Respiratory

Ventilation Type

Ventilator Settings

Ventilation Hours

Tracheostomy Size

Baseline SpO2

Baseline EtCO2

Cardiac & Medical

Heart Conditions

Allergies

Medications

Emergency Contacts

Care Team

Critical Instructions for EMS

EMERGENCY MEDICAL PROFILE

Congenital Central Hypoventilation Syndrome (CCHS)

CRITICAL: IMPAIRED RESPIRATORY DRIVE

DO NOT sedate without CCHS-experienced physician. Sedation can suppress already impaired respiratory drive. If intubation is required, patient MUST be mechanically ventilated — will not breathe independently under sedation or anesthesia.

Patient:

—

DOB:

—

Genotype:

PHOX2B 20/27

Allergies:

None known

RESPIRATORY

Ventilation: Tracheostomy with mechanical ventilation

Hours: Sleep only (10-12 hours)

Settings: SIMV, Rate 14, TV 120mL, PEEP 5, FiO2 21%

Trach: 4.0 Shiley cuffless

Baseline SpO2: 95-100%

Baseline EtCO2: 35-45 mmHg

CARDIAC

Monitor for prolonged sinus pauses