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When It Happens to Your Family

By William Dane, Public Affairs Manager, Brain Injury Association of America

I didn’t have a close connection to brain injury when I accepted a job with the Brain Injury Association of America (BIAA) in March 2014. My grandfather had suffered a stroke in the early 90s, and I had a friend in high school who sustained a traumatic brain injury in a car accident, but I did not come into this community with a solid knowledge of what so many go through on a daily basis.

My parents divorced before I could crawl; I’m not complaining. My mother’s marriage to my stepdad predates my earliest memories, and my father remarried before I was in first grade. His was a package deal, complete with two new sisters, the subsequent loss of two-thirds of my toys, and a haunting memory of my Batman-themed playroom being painted a soft pink. Rachel is a year older than me; Juliana a year younger. What began as disdain for one another moved to tolerance, then acceptance, and eventually grew into love. We have the unique and occasionally tumultuous bond only found in a blended family.

On the evening of December 7, 2015, I checked my phone and discovered several missed calls from my dad. That should have left me with some looming intuition, but it didn’t. Dad is impatient and has yet to understand voicemail. In the course of seven consecutive messages, I learned Rachel had a “cardiac event” while sitting up in her bed watching television. Her heart had stopped – twice – and she had been revived both at home and in the ambulance on the way to the hospital. 

I made the eight-hour-drive from Austin to Oklahoma City in five hours. When I arrived at the hospital at 2:30 a.m., Rachel was in the intensive care unit (ICU) and had been placed in therapeutic hypothermia because her heart had stopped – cause unknown – and there had been a subsequent lack of oxygen to her brain. As Juliana and I sat on either side of the bed holding Rachel’s hand, re-telling the same inside jokes and stories we had shared over the last 20 years, it dawned on me that Rachel had an acquired brain injury. Suddenly it was all very real…

The 36-hour wait to bring Rachel out of the coma actually took three times that long because after being cooled down, she had to be warmed back up. When she was finally brought out of coma, the prognosis was grim. Rachel was posturing and seizing so violently that her hands and legs had to be retrained. A quick decision was made to put her into a drug-induced coma.

Because of my job with BIAA, I found myself in the uncomfortable position of being the medical interpreter for our family. Fortunately, word spreads quickly in the era of social media, and a handful of brain injury experts with whom I had worked provided the information, support, input, and advice I needed. At the first in a series of “family meetings” with her medical team, I was asked if I was a doctor because of the laundry list of questions I posed while the rest of my family was intent to listen. So, yes, I was that guy.

It may be hard to believe that a grown woman from a nice upper-middle class family didn’t have health insurance, but that was the case for Rachel. So I did exactly what the insurance companies and other Affordable Care Act naysayers said – I enrolled Rachel in Obamacare after she got sick. I navigated the website and waited in the queue until she was set up for a new policy that would begin January 1, 2016. I was quite proud that I’d manage to sign her up exactly three hours before the published deadline and that her coverage would take effect in two weeks. Looking back, it was a stretch for me to feel confident Rachel would ever use the insurance plan. Two weeks seemed like an eternity, and as we all kept watch at the hospital the minutes seemed like hours. 

I made the trek back to Austin after the first week. Christmas was approaching and I would be returning to Oklahoma City for the holiday, but I was out of clothes, behind on work, and emotionally drained. My parents tried to conference me in on meetings with Rachel’s doctors, but they were usually unplanned and rarely did they have the time to get me on the line. I spent time scouring the internet and talking to friends in the brain injury community – polling them, looking specifically for someone to tell me what to expect when that was impossible. It’s funny, as I write this I noticed I still have the list of her medications from her 13th day in ICU on my peg board – I kept them there so I could read them off to whomever I was quizzing. 

A few days before Christmas we were told there was very little hope for Rachel moving forward. I had missed the meeting where this was communicated, but arrived back in Oklahoma City just in time for the conversation about organ donation. That was a very difficult day; nobody was ready to give up, but it almost felt like we were selfish to ask to keep fighting. Rachel was still in a drug-induced coma, and there was a consensus among the family that no decision would be made until she was brought out of that state. This was risky, we were told, because it would be upsetting to us to see her seizing again and could cause her further harm. I have to give my dad some credit here; not to take away from anyone else, but he had been her primary advocate. He read every article there was to read and was willing to try anything. 

Over the Christmas holiday Rachel’s sedation was gradually reduced and her eyes were open. She had developed pneumonia and was suffering from a Methicillin-resistant Staphylococcus aureus (MRSA) infection. We were required to wear a paper gown and gloves when in her room. It was obvious she was somewhat aware of her surroundings, and I couldn’t help but wonder where she thought she was as I’m sure we looked like aliens in space suits. It was on Christmas day, I believe, when I was sitting in her room and noticed she had a few whiskers on her chin. Rachel wouldn’t appreciate whiskers, so I convinced a nurse to find me some tweezers and set about taking care of this little problem. Her eyes tracked me as I came toward her, and after the first pluck she glared at me. I told her it was medically necessary and she actually grinned – Rachel was back! 

Christmas had fallen over a weekend, so when her doctors returned from holiday leave on Monday, they were all surprised at her progress. Suddenly we weren’t hearing about organ donation but instead discussing next steps. The dreaded MRSA infection was responding to antibiotics and her insurance would take effect January 1 – things were looking up. 

As the calendar turned to 2016, Rachel was weaned off the ventilator and had even begun to say a few words. She was moved to Intermediate Care – quite a win at that point – and within days was getting up with assistance and walking further and further down the hall. The next logical step was an inpatient rehabilitation facility, and we were making every effort to transfer her. Although her insurance was active, we hit a roadblock when they made the first of three denials, suggesting she was fine and could just go on home. To say it took an army to win the appeal is a vast understatement. Between family, friends, and hospital staff, I estimate there were 30 calls per day to her insurance company. I went so far as to contact the insurance company’s lobbyist in Oklahoma. I thought that was overreach until I learned Dad had found the home telephone number and address for one of the insurance company’s review doctors and was prepared to make an in-person plea. Luckily, before he could go picket someone’s driveway, they approved her transfer to inpatient rehab on the third appeal. It was the middle of January – Rachel had been in the hospital for six weeks – and she was grateful for the change in scenery.

Her time at the new facility was well worth the fight it took to get her there; she received excellent care and progressed quickly. Insurance approved her for a two-week stay before mandating outpatient treatment. In my opinion, inpatient therapy makes a greater difference, but outpatient is what’s in the cards now. Rachel has trouble speaking and with coordination, but she’s getting better every day. She gets discouraged, especially over the deficits nobody can see like her short-term memory. She says she feels like everything is just slower, but I’m forced to argue against that with every witty comeback she throws my direction. 

For me, this experience has been a dark irony and a huge lesson. I’d heard from family members who’d called BIAA’s Texas Division over the past two years about their experiences, but I’d never lived them – the waiting and wondering, the search for answers, the battle with insurance companies, the outpouring of support from friends and family, the slow slide back to “normal.” 

From my family’s experience, I now know a brain injury really can happen to anyone, anywhere, and at any time. And at the end of the day, I see and comprehend just what it means to be an advocate for someone you love. This is a community nobody chooses to belong to, but it’s full of wonderful people. Together, we are making it easier for the next Rachel.

This article originally appeared in the Spring 2016 issue of THE Challenge! To read the rest of the issue, click here.

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