I had the opportunity along with another mom from the family advisory committee to be part of a panel on palliative care. The conference was for 60 multi-disciplinary staff. It was a great event where we got to share our children's story and how we, their parents, deal with, take care of and appreciate all that the hospital nurses, staff and doctors do for our children. I just wish I could represent a larger population and understand everyone's story to help staff interact and care for these children and their families.
Overall it was a great event and I look forward to more opportunities in the future. We are striving to put together quarterly panels with different topics. One thing that many people were interested in was receiving and sharing difficult news as well as the topic of caring for a woman who had a stillborn.
We shared our story, explained how we cope, how the child affected our lives, the greatest rewards and challenges, number one thing we would want staff to know. The greatest reward for me, as a mom, was treasuring life to its fullest and the greatest reward for danny, as a dad, was receiving the insurance statement that covered $800,000+ on medical expenses for one of Tylers stays....how different men and woman can be!!
Anyway, if you would like to share your story with me to gain a greater understanding, please do so. You can email me at heidi.mcmillan@gmail.com. The more we understand and more perspectives we have the greater tools this can be. I encourage all to get involved in family centered healthcare in there area to help make pediatric care a positive experience for all!!
