I wanted to ask you all for your help.
I have been invited to participate in a consortium at my local Children's Hospital as a family liaison to assist in a nationwide development of the care of our KD kids. My local children's hospital (Dell Children's Medical Center) is collaborating with other children's hospitals around the nation to develop a standardized plan of care (guidelines) for our kids from the time they arrive at the ED, through hospitalization, discharge planning and follow-up care.
A little about me and how I came to be a part of this select group: I am a Registered nurse with 23 years of clinical experience. 15 of those years were spent in Cardiology, both pediatric and adult.
Two years ago my daughter (at age 10) was diagnosed with KD. The group of cardiologists that now cares for her is the same group of doctors I worked for while I was pregnant with her.
While I knew quite a bit about KD and what to expect in the hospital from my time as a pedi-cardiology nurse, I really knew NOTHING about what happened after discharge and what to expect.
My daughter is part of the 20% of these KD kids who developed coronary artery aneurysms (CAA). And as some of you know there is a LOT of follow-up immediately after discharge and for many years to come!!! For the other 80% without CAA's the follow-up is very different, yet still demanding on the family initially. Our goal for the follow-up portion of this educational piece is to set expectations for the families of KD kids.
My daughter's cardiologists needed a family liaison for this consortium and asked me if I would help because of my extensive cardiology background as well as the fact I HAVE a kid with KD and CAA's and I have been through the process of ALL THE FOLLOW-UP!!!
Ultimately what they have asked me to help them with is to come up with educational information to provide to the families to help them understand the disease process and what to expect during and after the hospitalization (because I live it now with my daughter).
What would help me is if you could answer a few questions so I can better understand the care and information you received during and after your KD hospitalization so that the group and I can determine the educational needs of our KD families. Even if you're living outside of the USA, please provide your answers as well as this information may eventually be disseminated worldwide!!!
I have created a brief survey with 10 questions found here: https://www.surveymonkey.com/r/8G7TRWV. Also if you have additional information, suggestions or requests please email me at mykidhaskd @ gmail.com
I am working on my rough draft for this educational piece and that initial rough draft is due July 1. We will continue working on this and hope to have it approved by the committee overseeing our work by December. Once it is completed it WILL be made public on Dell Children's Medical Center's website so that others around the world can see/use it.
Thank you all SO MUCH for your help with this!! This will help make this entire process a little easier for our future KD families and we could not do it without your input!! So again, THANK YOU!!!!
KD Guidelines consortium
Discuss upcoming parent, research, and physician events
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