A Love Letter to Our Care Coordination Team, by Kathryn Anne Casey

I married my husband on July 9, 2010, and chose in him a partner for my life. He

was not my destination, the goal of all I worked for. Neither was I, his. Instead we

married with a common vision for our lives, a shared vision, in which we could see the

path ahead and know that this was the person with whom I wanted to walk it. We chose

each other based on laughter, love, sensitivity, a commitment and appreciation of the

fine arts.

In that journey together, we bore children. We shared home after home, making it

over each time with more love, more wisdom and more children. Each year became

another year in which we chose each other.

Then in 2016, our ability to choose changed, and we embarked on a new path, one

with bends in the road lain before us. On that path, we faced a crisis we never would

have chosen.

In Peter, our fourth-born child, we met many a specialist and went home from the

hospital with pages-long directions on who to call and for what. Craniofacial,

gastroenterology, dental, ophthalmology, ear-nose-and-throat, neurology, genetics and

on and on. During various hospital stays immunology, infectious disease, and

hematology came our way.

Dr. Henry, attending to our unit, walked in and explained they were piloting a

program for kids like Peter who have many specialists to see, many appointments to

make, and could benefit from assistance coordinating them all. Would we be interested?

Yes, please.

And thus we joined FLIGHT, the FamiLy InteGrated Healthcare Transitions Program, a

complex care and care coordination program for technology dependent children.

They printed a cheat-sheet of contact information for all the specialists. They printed a cheat-sheet with Peter’s history and diagnosis, which I could hand over when he was admitted to the Emergency Department every other week in those early days. They gave us a pager number, which I used generously when Peter struck a fever, to benefit from Dr. Henry’s calls to the local ED, and subsequent calls to me informing me of what the local doctors were not saying.

Our Case Manager, Amy, made calls to schedule and cancel appointments. She worked with the case manager on the floor to help us escape the hospital earlier than later.

They consolidated information. They coordinated calls and appointments. They cared.

On paper, it seems fairly simple. In person, it ended being wildly more complex.

Amy visited at most of our appointments, which I attended alone with Peter two hours from home while my husband cared for our children at home. Amy visited during hospital admissions. We joked, laughed and imagined pranks I didn’t dare carry out. Dr. Henry and I talked about the many possible scenarios when I knew Peter was bound for another admission.

He asked if we had thought about how we’d secure the TPN bag in the backseat for the drive home. We enjoyed a conversation on playground outside the unit, a quiet moment when we considered if Peter was not used to the outdoors or if there might be some light sensitivity. Dr. Henry navigated the hospital crib downstairs to the ICU when things turned worse for Peter. Amy sat with me and answered my questions about what it would look like if Peter didn’t turn the corner.They celebrated Peter’s 2019 free of hospital admissions. They cheered for Stella’s healthy birth free of complications and followed by a healthy birth weight.

I thought one day, perhaps, we had to graduate from the FLIGHT program. Peter is still

technology dependent but in what we have learned as parents, we have come to a new stage. And then I realized, as team captain to this medical world managing Peter’s care, my

husband, who I chose, is my partner at home. In his bedroom, he helps me read the symptoms, reassuring my fears when I lose a steady perspective.

On the other side of the Altamont pass, is FLIGHT, my partner hospital side, when I faced so much alone as my husband held down the fort at home. I did not choose them, or this, but our life is richer because of it. We have an extended family in that hospital. Because of that, even in the darkest moments we faced there among the machines, I was never alone.

Kathryn is a Northern Californian wife, mother of five children on earth and three in Heaven, speaker, newspaper reporter, columnist and author of Journey in Love: A Catholic Mother’s Prayers after Prenatal Diagnosis and upcoming book, Peace in Pregnancy: Devotions for the Expectant Mother. . She splits her time reading, writing, homeschooling, attending to her Peter’s medical needs, and shuttling him to appointments at University of California San

Francisco while listening to her favorite podcasts. To read more of her writing, go to www.kathrynannecasey.com.