Few people are more determined and resourceful than a parent caring for their sick child.
Anthony, as a happy toddler
For a long time, it’s been a way of life for Trina Ostrander of Buffalo, New York. “My 13 year old son Anthony has been medically fragile since he was 22 months old. He went from a walking, talking, happy little boy, to total care. Bed bound, ventilator dependent, tube fed and multiple other medical problems and disabilities.”
Trina must have her dark days. But what she says she wants most is to share with other families what she’s learned helping her son.
“Although I am not a patient with a voice, I am a caregiver with a voice. It has always been my passion to help others with everything I struggled with over the last 12 years. I don’t feel other families should have to figure things out like I did….on my own.”
Trina reached out in an email to the Patient Voice Institute.
Anthony today with mom, Trina
“…my goal was to try and start something like you already have implemented. It is my passion, and has been for so many years to help others. There is just so much information that I can give, as well as information from other families and medical professionals I have dealt with and became friends with over the last 12 years.
“When I went to your website, I was astonished at what I was reading. This is EXACTLY what I am looking to do.”
Trina, you humble us with your generous spirit and desire to help others. We created PVI to welcome, learn from and share the wisdom of people like you. We need all our voices in sync to create health care that works beautifully for families, as well as for the wonderful doctors, nurses and other clinicians who help us live healthier lives.
(Trina has taken the time to explain how her nightmare unfolded, and to gather a list of specific things she’s learned, so we can share them in a later post. Bookmark this site to find it.)
Meantime, starting this week, we’re posting your stories as they relate to a particular Patient Voice Principle. (The theme will be announced every Monday on the PVI Facebook page.) This week it’s under the theme of Safety: that patients deserve “treatment that is appropriate, with disclosure of risk and discussion of less-invasive alternatives.” Marian Hollingsworth responded by sending us a heartbreaking story about what inappropriate treatment did to her dad. I’m in awe of how she dug to find the truth, and how she used her experience to benefit others. We’ll share her story later in the week.
Have you had an experience, a “medical awakening” others can learn from? What did you learn? What do you want others to know? What would you do differently? The Patient Voice Institute invites you to tell your story, and help create a new day in health care. Email us at info@patientvoiceinstitute.org. Follow us on Facebook and Twitter.
