Life at Home with a Trach
There is no road map when the diagnosis is so rare.
The mother of a son with a rare genetic condition reflects on her son’s path to getting a feeding tube and a tracheostomy before they had a diagnosis. She expresses that his care teams were important in teaching them how to care for their son who now had a trach and a vent.
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There is no road map when the diagnosis is so rare.
Nursing: Sacrificing some control, we had to expand our village.
Tracheostomy: It’s a big decision. What will be the impact on the family?
Tracheostomy and Decannulation: Reassessing benefit over time
