Eight years ago, on Memorial Day weekend, I heard the sirens across the river from where I sat in our family home in RI. Unaware that my life was about to change drastically, I took a moment to think about who may be in the ambulance and wished them health. Shortly, I was to discover that those sirens carried my then 8 year-old daughter to the hospital emergency room. She had fallen off of our boat. The propeller slicing through her skull and face. I, and my family, were about to live through the most horrendous and most miraculous couple of years. We did not do it alone.
The propeller on the boat had sliced 2.5in into the left frontal lobe of her brain and again through her face and ear. The first hit was 2-3cm from the corpus callosum and just barely missed the amygdala. The second barely missed her eardrum and her tear duct. Essentially, all big words aside, she missed death by a few centimeters in a couple of places. She lay in an induced coma for a couple of days as we were given the prognosis: if we were lucky, she would be in the pediatric intensive care unit (PICU) for weeks, at least. Then, she may go to a regular wing for months and then possibly a rehab for at least a year.
Thus began our journey of learning medical terminology, protocols and procedures. From learning how to “lock” her existence in the hospital so no one could even know she was there to tending to a Cerebral Spinal Fluid (CSF) drip. We became incredibly medically educated. We learned the difference between a pic line and a central line, which nurse was the best at drawing blood and which veins looked good vs. which veins were good. We learned how to inject antibiotics and flush with heparin. We learned to be up and dressed before the doctors came in for rounds and which questions to ask and of whom. Though she was out of the PICU in less than five days, the hospital in a couple of weeks and the rehab by mid-July of that year, we still had a year of home care, procedures and eventually her final reconstructive surgery as well as years of healing and educational interventions.
Our communities rallied around us. The local Ronald McDonald house provided shelter for us, our family and our friends close to the hospital as well as meals. The Dali Lama blessed some stones she had in her room that a friend carried to India for us. We got messages from people in the pubs in Ireland, messages from people in countries in Africa, people in Canada, Haiti, and all over the United States. The story was published in various newspapers and the in depth journey is written and being edited (look for the upcoming book: Sirens from Across the River).
Why does this matter, here in this space? On this blog? Because through all of this, we had a care manager, a woman who called us once a month. (The accident happened in Rhode Island and they began reform on their healthcare system quite some time ago.) In all of the chaos, the moments of triumph, the moments I found myself crouched on the bathroom floor crying, and the moments of relief, I welcomed her call each month.
I never met this woman, but her voice was a breath for me. She would ask me how we were doing. She would say things like, “I see you have a surgery coming up.” She would ask questions like, “can I send you some information on traumatic brain injury?” A week later, a booklet would arrive in the mail with a snippet of info. It wasn’t necessarily news to me, but it felt good to know that someone was following through, someone who didn’t necessarily expect an update from me, but already had an idea of what was next, at least medically and emotionally. She encouraged us to be patient with the process, asked how our daughter was doing in school and inquired about mental health appointments for the trauma we had experienced. All of this, in about fifteen minutes of time on the phone once a month.
I remember the day she said, “I think we are done.” My heart sank a little and I asked for one more month. One more month to prepare myself to say goodbye as we finished with the administering of a four time a day insertion of antibiotics into the port in my daughter’s chest and we prepared for the last surgery that would replace her missing skull. “Can we at least wait until she is out of the helmet to say goodbye?”
“Of course,” she replied, ” I’ll call you again next month.” I exhaled slowly, releasing the tension in my body I didn’t even know I had and held onto the small sliver of knowledge that someone was looking out for us; someone that didn’t expect anything in return.
Now, years later, I feel I have been given an opportunity to be at the center of the change in New York, working in the care management department of our organization and I am hopeful. I see where we have come from and have a glimpse of where we are attempting to go as the program leaves its infancy and begins its toddlerhood. True integrated care moves away from treating just a diagnosis and instead, sees a whole person, realizing it is all interconnected.
I watch the staff, the care managers, as they meet the challenge of this transition and I share stories like this with them. I carry with me my own experience and try to point out where they make a difference, even with those that do not seem to have an exorbitant amount of needs. We celebrate successes, forgive the bumps in the road and utilize each experience as a learning one to deepen our practice all while it’s still being figured out on multiple levels. We have become fairly comfortable with change.
Though we, at Access: Supports for Living, currently practice more of a hybrid of telephonic and face to face interaction, I read articles like the one in the NY Times: The Tangle of Coordinated Care () and I want to scream out, “this is what telephonic care management is!” in response to the confusion. I hope one day that we may no longer be confused and instead embrace the value of the voice on the other end of the line.