I wrote this three days after my son’s return home, and it took me six months to have the guts to share it.
After my son’s first medical journey in overcoming torticollis; my frustration with the lack of transparency in clinical outcomes led me to write a book on Value Management for Healthcare, create My Doctor Knows to help patients make informed decisions, and leave the private sector to work at the Department of Veterans Affairs to help them focus on the value-based outcomes for Veterans. However, in the quest to promote transparency in healthcare I’ve realized how far we have yet to go. We as individuals, parents, brothers and sisters know too little about those that provide us health care services or even grasp the true signs of a life-threatening disease or condition.
My four-year-old son Sebastian went to see his pediatrician two days after Christmas . He was taken immediately to the Emergency Room based on a urine sample. They did more tests and was diagnosed with Type I diabetes and extra large ketones. This experience has taught me again how little we really know about those that would provide us health care. Had it not been for my persistent wife and her countless hours of research, who knows what would have happened to our son – Diabetic Ketoacidosis (DKA) and Ketones is a serious condition. It also did not provide comfort that the hospital chooses not to publicly report its outcomes (complications, deaths, readmissions, infections etc.) to the Center for Medicaid Services despite a legislative requirement to do so.
We call our son “Bash the Brave” because of all he has gone through and the courage he has shown. However, it breaks my heart to hear him say, “I don’t want to be brave, I want to be normal”. The six blood glucose pricks (provided you are able to draw blood the first time), and minimum of four insulin shots a day have worn down his spirit. Last night, while sleeping the needle bent during injection causing him to awake in tearful pain – and caused a large bruised bump on his thigh. He now runs away when I try to give him a hug. I pray and search for the wisdom to make his life more “normal” just like he wishes. But when you are faced with a medical condition where do we go to gain wisdom and learn based on fact and results? Where do we hear the voices of other patients or Tell Your Story? The reality is that no such place exists. With your help we can bring transparency to healthcare and all benefit from it. Together let’s help each other get to “normal”.
This is a new chapter in our lives, but we are blessed to have resources, family, and friends to support us on this new medical journey for our son. If you have a story to share or wish to learn more about provider or hospital outcomes, I encourage you to use My Doctor Knows. Together through our shared experiences we can finally bring transparency to healthcare that is so desperately needed.
Thank you and God Bless.
Transparency would at least help uninsured patients and all consumers of care know what they were going to be charged and the quality of the services they would receive. – Dr. Regina Herzlinger