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Navigating Medical Complexity Coping With Loss Neurojourney

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Home > Goals Of Care > Themes

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Theme: Goals of Care

Exploring the idea of a Trach: “No one could give me a guarantee that it would extend the quality of her life.”

Page: 5 of 7

Exploring the idea of a Trach: “No one could give me a guarantee that it would extend the quality of her life.”

Exploring the idea of a Trach: “No one could give me a guarantee that it would extend the quality of her life.”

In this Zoom interview with CPN, Michelle — mother of Alex (age 7) and Julianna, who had a severe form of Charcot-Marie-Tooth disease and died at age 5 — describes all the reasons they opted not to get a trach for Julianna: her love of talking, the potential complications; the lack of a guarantee; BiPap was working; her condition was progressive.

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