Last week, I promised you an update on Wings for Audrey. Hang with me while I give this the detail it (and you) deserves.
Let’s back up a little, shall we? It was in June of last year, 2016, we all reached our goal of $100,000.
Many of you have been with us from the very beginning. You have followed Wings for Audrey from its conception. Our collective agreement was to fund a lecture program. To educate, inspire and empower those who make it their life’s work to heal children.
As time progressed and discussions turned into potential plans, something was missing.
I, personally, felt a strong absence, although I couldn’t pinpoint what it was.
A year’s time has past. During those months, Wings for Audrey has grown to over $113,500, our third child has become a one-year-old and I discovered what is missing.
The wonderful thing about a lecture program is that it is an investment in the future; it creates the potential for lives to be impacted for the better. My dream is that Wings for Audrey would ALSO honor Audrey’s memory just as it was.
Can Wings for Audrey do both? Be both?
Early this Spring I had a meeting and another this past Monday to discuss just that.
Part 1 is a GO and it’s really exciting:
On November 3rd, we are honored to be hosting the
Wings for Audrey Palliative Care Lecture Series
John D. Lantos, M.D., Children’s Mercy Kansas City
Leading Expert in Bioethics & Palliative Care
Bioethics? Palliative care? I know, some of you reading may have checked out when you read those words. Please don’t.
At first, I wasn’t sure how this applied to Audrey’s story. I didn’t understand how hosting lectures on topics of this nature made sense. Let me give you a relatable example…
If you read the story of Audrey, you know her chart was thick. She had a plethora of issues. Each week something new came up. She failed to thrive. Period. But, for the most part, her care seemed to be treated acutely. What I mean by that is she had so many serious conditions, the focus seemed to be on whatever “fire” was burning at the time. Rarely, if ever, did I hear a report on the “whole picture”. I remember one particularly dark day (both literally and figuratively), Audrey’s team came to round on her, I only listened, didn’t make eye contact or ask questions. The team was neutral. Audrey wasn’t well yet she had no fires to put out. She was simply alive.
I spoke to the Nurse Practitioner and said, “It’s like they are giving up on her.”
This was a couple of weeks even before she passed away. I believe this is when a Palliative Care Team would have been in Audrey’s best interest, and ours. A team that views the patients as a whole, to provide an extra layer of care, communication and support.
And an example of bioethics? This isn’t something I have shared much, but I’m allowing you in because I believe it helps you understand a glimpse of what families go through at times.
On Audrey’s last night, you know, when the swarm of doctors were doing everything they could to keep her heart beating? You may recall the last resort was to put her on ECMO. In the chaos and hustle, we, her parents, were asked what we wanted to do. Move forward with ECMO?
I wanted a coach. Someone who could have called “TIME OUT” for us. I turned to one of the doctors and said, “Are we forcing her to stay alive?” Then the same question to Chris.
This was our experience with bioethics. When do you keep fighting and when do you let go? Thankfully, we received a clear answer through medical advisement and deep prayer.
Children’s Hospital at OU has made Palliative Care an important element since Audrey passed in 2014. We are eager to support their efforts and look forward to the brilliant way Dr. Lantos will fill the minds of people from all over Oklahoma this Fall.
Stay with me, team…the second part of Wings for Audrey…remember, the dream?
What I’m asking is a big ask. It’s a huge sell. It’s something that not everyone can easily get on board for.
On Audrey’s final day, we were incredibly blessed with being moved to what is called the Comfort Care Room. Typically, this room is reserved especially and only for Oncology patients and their families. On this Saturday, it was not in use, which is rare. Audrey was allowed to be there during last hours. It didn’t feel like a sterile hospital room. It was warm and memorable. Her passing was in a place that our family will cherish forever.
I want to develop a Wings for Audrey Room. A beautiful room that allows families to be with their little one as they take their last breath, or perhaps have passed and the family has just arrived, or even as a room where the family has space to make the most difficult of decisions about their child. Many hospitals have what is called a Bereavement Room, some especially for the NICU.
When I think of this room, I understand how difficult it might be for some to see the value. Hospitals are meant to heal, to save and to promote hope. I agree. AND, our story went differently. We had a daughter who lived a life within the walls of a hospital and her last day was as beautiful as we could have imagined for her. We want the same for more patients and their families whose stories are like hers and spend their last day at Children’s Hospital.
When we think of the whole patient, from beginning to end, how do we value their life even if their heart beats one last time? How can we honor their family? What if there is a place intended for just this purpose?
This dream is even more difficult than you can imagine to bring to fruition. Even a small space is a sacrifice of incredibly valuable resources at Children’s Hospital. It could be years before this might be able to happen, and that’s even IF the idea is approved by all the right powers-at-be.
The naïve girl in me thought this would take little convincing and it would be underway quickly. Patience isn’t really my strong suit, but I will be for this. It is worth it. I will fight for this because she deserves the honor. Because the children and their families who might have to spend time in this room are worthy of it.
For now, the announcement of Dr. Lantos and the lecture series this fall is something for us all to be proud of. We did this together!
As I know more about Children’s allowing us to develop a Wings for Audrey Room, I will let you know.
Thanks for hanging in there, with this post and through it all, gang. You really are the best of the best.
Love + Hugs,