tag:blogger.com,1999:blog-4377011905665036046.post7168160276810864414..comments2023-10-30T03:58:29.285-07:00Comments on Islands of Excellence: For my Daughter, the Patient: a "Golden Cocoon"Pat Mastorshttp://www.blogger.com/profile/12572742020333587763noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-4377011905665036046.post-46234739635846276552013-08-19T16:54:04.370-07:002013-08-19T16:54:04.370-07:00Nancy, thanks for you comments and the wonderful r...Nancy, thanks for you comments and the wonderful resource you shared. I'll be sure to pass it along!Pat Mastorshttps://www.blogger.com/profile/12572742020333587763noreply@blogger.comtag:blogger.com,1999:blog-4377011905665036046.post-9186628384912762532013-08-19T15:21:16.502-07:002013-08-19T15:21:16.502-07:00What a moving post. Thanks so much for sharing thi...What a moving post. Thanks so much for sharing this. The truth is that when we are patients, we all need our family - and the professionals taking care of us - to help protect the golden cocoon (love that image!). <br /><br />Your family’s experience also strikes me as a brilliant example of what is getting to be known as “trauma-informed care”. At every step of the way, you reminded your daughter’s providers that they could make this experience just a little less traumatic by finding ways to mitigate the most painful / scary / difficult parts. Along those lines, the www.HealthCareToolbox.org website and blog from the Center where I work (Center for Pediatric Traumatic Stress) has lots of easily downloadable resources to support trauma-informed care for children and adolescents. Thought those might be of interest. <br />Nancy K-Ahttps://www.blogger.com/profile/16351371965955787850noreply@blogger.comtag:blogger.com,1999:blog-4377011905665036046.post-65477079330879598912013-08-08T20:30:34.033-07:002013-08-08T20:30:34.033-07:00Louise and Adriana, you have no idea how grateful ...Louise and Adriana, you have no idea how grateful I am for your comments. I'm taken aback even now by how scared I was...this is something I'll never forget. Adriana, there was one nurse named Lisa who was so wonderful...I look forward to writing a blog post about the difference she made in our experience. And Louise, I thank you for the book recommendation (we will eagerly read it) and greatly appreciate the kind thoughts.Pat Mastorshttps://www.blogger.com/profile/12572742020333587763noreply@blogger.comtag:blogger.com,1999:blog-4377011905665036046.post-32574314004435463172013-08-08T06:14:59.932-07:002013-08-08T06:14:59.932-07:00Your family's experience is heart rending. It ...Your family's experience is heart rending. It reminded me of Sara Manguso's similar experience with an autoimmune nerve disease, described in her memoir, Two Kinds of Decay, which has a happy ending. May the same be true for your daughter.Louise10https://www.blogger.com/profile/02411935297870557507noreply@blogger.comtag:blogger.com,1999:blog-4377011905665036046.post-63811694219953128872013-08-08T06:01:12.106-07:002013-08-08T06:01:12.106-07:00I'm glad your daughter's recovering well, ...I'm glad your daughter's recovering well, GBS can be a terrifying experience especially when many of the hospital attendees are treating the patient as just another routine. It's always good to be reminded that there ARE attendees out there who make a consciously try to make a hospital experience a little easier for both the patient and the family.Anonymoushttps://www.blogger.com/profile/01426912457886272055noreply@blogger.comtag:blogger.com,1999:blog-4377011905665036046.post-21594625670423827212013-07-31T06:19:07.860-07:002013-07-31T06:19:07.860-07:00Thanks, Casey, and...Nancy, right? I think often a...Thanks, Casey, and...Nancy, right? I think often about what happens to people who don't have support. Jess was on a neuro unit with many elderly folks, and when we passed other patients' rooms, there were some it seemed who never had visitors. The sense of "what will happen to them?" is one reason patient advocates keep pushing for "better". It's a little corny, maybe, but MLK said "I can never be what I ought to be until you are what you ought to be". We rise or fall as a society by the opportunity available to all.Pat Mastorshttps://www.blogger.com/profile/12572742020333587763noreply@blogger.comtag:blogger.com,1999:blog-4377011905665036046.post-10919755065433786722013-07-30T11:47:54.543-07:002013-07-30T11:47:54.543-07:00Thank you for sharing your daughter's story......Thank you for sharing your daughter's story...and for humanizing what happens to people when the medical world comes down around them....so many have no one to be their advocate...your daughter was blessed by you and your husband, and your knowledge and assertiveness. She was wrapped in that warmth. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4377011905665036046.post-39167889956339415812013-07-24T16:12:51.606-07:002013-07-24T16:12:51.606-07:00Powerful story of how live + commitment attract li...Powerful story of how live + commitment attract like to like. This is how healthcare for the dangerously ill *should* be. Kudos, mom. Keep bein' that burr on a collie.MightyCaseyMediahttps://www.blogger.com/profile/15676994193165585448noreply@blogger.comtag:blogger.com,1999:blog-4377011905665036046.post-66653696359156667482013-07-19T12:23:14.053-07:002013-07-19T12:23:14.053-07:00Thanks, Bart!Thanks, Bart!Pat Mastorshttps://www.blogger.com/profile/12572742020333587763noreply@blogger.comtag:blogger.com,1999:blog-4377011905665036046.post-10848932067996509602013-07-19T12:00:27.693-07:002013-07-19T12:00:27.693-07:00Very sweet post, Pat.Very sweet post, Pat.Bart Windrumhttps://www.blogger.com/profile/01352212496927004003noreply@blogger.com