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Ep 108: Our Hospice/Comfort Care Experience
Manage episode 376815213 series 3483971
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Amber, Jenn, and Emma discuss their experience with "Hospice/Comfort Care" measures. One of us skipped over it, the other was not given a choice and the last of us chose it! In this episode we discuss our vastly different experiences and what lead us to make the decisions we did.
We discuss the importance of titration of the FIO2 for your child.
Disclaimer: "Amber here, in this episode we do discuss death, I want to put a quick disclaimer that my ease of using the word "dead" in the episode came from my own healing of trauma. I was at a beautiful retreat where I had the honor of hearing Bethany Bernard play her newest album. She discussed, there is a terrible stigma around using the words "death, and dead." It took me 9 months to be able to say that my own daughter had died and not using that verbiage for me, minimized her story."
Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers.
To receive support or learn more about our mission, visit www.extratolove.org
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