August 1, 2009 by Heather Oman
Whoosh-whoosh, click click click.
The sound pulled me from my shallow sleep, and I blinked at the clock on the nightstand.
I untangled myself from the covers, searching for my glasses, fumbling in the dark.
An alarm rang out through the baby monitor I kept in my room. The sound sent a bolt of electricity through me, and all sleepiness was gone. I knew what that sound meant. It meant Reed was no longer breathing. It meant I could no longer fumble. It meant I had to run.
* * *
Reed Nixon and his younger brother Rob were on the cover of a magazine once. It was the first time I had seen them, although I had heard of them long before I encountered them in the Boston Globe’s PARADE Magazine. Everybody in the Boston stake had heard the dramatic story of the car accident that left the two brothers, star cross-country runners, with broken necks, paralyzed for life. It was a story told in the hallways between Sunday meetings, in that hushed voice people use when describing tragedy. Did you hear about the Nixons? How sad, how hard, how brave of the family to face all of this. We would shake our heads, sigh to the heavens, and move on to the next topic.
I took my time reading the article. The author had spent some time with the family, and there was a picture of all of them around the dinner table, Reed in his enormous wheelchair, Rob in his. Reed’s injuries made it impossible for him breathe on his own, and his chair housed his ventilator, a machine that blew air into his lungs through a hole in his neck. Yet for something so important, the connection between tubing, man, and machine was often tenuous at best.
The article said that it was this instability that required Reed to have 24-hour care. That, and the fact that his lungs often filled with mucus that he couldn’t expel on his own. His lungs needed to be suctioned through that hole in his neck so he wouldn’t drown in his own secretions. I later learned the clinical terms are deep suction or bronchial toilet. Unpleasant terms for an unpleasant process. Such was Reed Nixon’s new reality.
I read further and came to a description of Reed’s frustrations with always needing to have a nurse around. Sometimes, the author said, he just wanted to go someplace alone.
As I read that a thought popped into my head.
They need you, the thought said.
That’s ridiculous, I thought back. Who calls up a family and says, “Hey, I think you need me.”
Whatever. I flicked the magazine back onto the coffee table and pushed all thought of the Nixon family away with it. I went into the kitchen, hunting for something to eat.
* * *
Reed’s alarm was still going off when I got to his room, and there was an unnerving gurgling sound. The alarm had gone off not because the tube had come unattached, but because the air being pushed into his lungs was blocked by heavy secretions. He needed to be suctioned. Immediately.
Reed’s father, Mark, once told me that he thought a person could go without oxygen for about six minutes, which, he pointed out, was more than enough time for me to run to the bottom of the stairs and holler for him at the top of my lungs if necessary. I have no idea if that number is correct, but I found myself mentally ticking the seconds it took to gather everything I needed to suction Reed’s lungs. I realized I was holding my own breath, and I quickly exhaled, knowing I needed to be completely there. If I passed out, Reed could die.
I opened the sterile package that held the suction catheter. I pulled on the gloves the way Mark had trained me, careful not to contaminate them with my own germs. Reed’s lungs couldn’t handle any foreign microorganisms. They were dealing with enough as it was.
I connected the suction catheter to the suction machine and flipped a switch. The machine rattled as it came to life, and I quickly suctioned the immediate blockage in Reed’s tube. Then I threaded the catheter further into his lungs until Reed mouthed, “OK.” I pulled out the tube, suctioning as I went, then manually forced air into Reed’s lungs with an Ambu bag. I watched his face, waiting for him to tell me what to do next.
Again, he mouthed.
* * *
After I read the article in Parade, I told my friend Rick about the Nixons. I was working as Rick’s personal care attendant, a job I had taken to get me through my senior year at Boston University. Rick had severe cerebral palsy and had been in a wheelchair all his life. But despite his disability, he accomplished much, including living independent of his family. Rick felt it was his mission in life to show that people with disabilities can still lead exciting and productive lives.
Another thought popped into my head as I told Rick about Reed and Rob.
The Nixons need to meet Rick. And you need to introduce them.
Some thoughts are easier to handle than others.
Using the resources available in Mormon networking, I contacted the Nixons and set up the meeting. They were happy to meet Rick, and we spent a pleasant afternoon together.
It was after that meeting that they offered me the job.
Initially I told them I could work Sundays, as my singles’ ward met late in the afternoon. They needed help getting everybody ready for church — dressing, brushing teeth, and doing breakfast. I was willing to do that for them. But they wanted, and needed, much more from me.
“A live-in position?” I asked.
“Yes,” they told me. “We need a live-in who can handle complex medical needs. Our current live-in isn’t working out. We need someone to take care of our boys during the night, when they need to be repositioned every three hours to avoid bedsores. And Reed needs to be suctioned periodically.”
It seemed ridiculous, preposterous, unthinkable to take their offer. Live with a family I hardly knew? Take care of medically fragile teenagers? Give up any semblance of a social life—for them? I told them I would have to think about it. They told me they needed an answer as soon as possible.
I worked for them the next Sunday to see what I would be facing. Reed’s vent care went far beyond any skills I had learned with Rick, and both boys required more help than I was used to providing. Plus, there were two of them. How could anyone manage to take care of two quadriplegics at once? It was overwhelming, but Mark told me he needed an answer that night, as they were letting their current employee go. I drove home, shaking my head, repeating aloud, “I don’t want to do it. Please, don’t make me do it.”
But sometimes it seems the Lord doesn’t really care what you want. He’s more interested in what needs to be done.
I pulled up to my apartment and turned off the ignition. I sat in the quiet car and looked down at my hands as I fidgeted with my keys. Facing graduation, I knew I needed to find a job, but was this the kind of job I wanted? What about a mission? I’d always wanted to serve a mission. I even had the packet of papers sitting in a drawer in my room, fresh from the bishop, ready to be filled out. Didn’t the Lord want missionaries?
I sat in the car so long I began to get cold. I looked up into the rearview mirror and said aloud, “OK. I’ll do it.”
I got out of the car and walked up the stairs to my apartment. I found another mirror, looked into it and said again, “OK. I’ll do it.”
A feeling came, one that I had never felt, but recognized nonetheless because of the description I had heard in a lifetime of Mormon meetings. The burning of the bosom. An unequivocal answer to my question. A confirmation beyond doubt that this was what the Lord wanted me to do.
My face broke out into a smile, and I laughed as I said to my reflection,
“OK, I’ll DO IT!”
I called the Nixons that night and gave them the answer they needed. Reed’s mother Sheryl whooped with joy.
* * *
After suctioning Reed three times, I worked the Ambu bag, concentrating on getting him as much air as possible. He couldn’t breathe while being suctioned, so the Ambu bag follow up was crucial. Reed’s face, contorted in pain and discomfort while being suctioned, started to relax, and he closed his eyes. I continued to push air into him, watching his chest rise and fall, waiting for his signal to stop. Finally, he opened his eyes and mouthed “OK.” I removed the Ambu bag and reattached his vent tubing, connecting him back to his life-giving machine. I repositioned him, gave him his medication, and headed back upstairs.
I curled up in bed and looked at the clock. Almost three a.m. Another nurse would come at seven to relieve me, but the boys would have to be repositioned again before then. Reed would likely need another suction. The fatigue settled in, and I sighed thinking about the fog of exhaustion I had been functioning in since I had started this job. I had continued to take care of Rick two mornings a week after getting up with the Nixon boys the night before. It was hard. My only experience with such sleep deprivation was the occasional all-nighter I pulled in college, but that hardly compared. The Nixons sensed the toll my schedule was taking on my life, and once Mark even said, “I don’t want you to get so frustrated that you quit.” I almost wanted to laugh at him. Yes, the job was hard, but quit? No. This was the one time in my life when I knew I was exactly where the Lord wanted me to be. And when you know something like that, you don’t just quit because you’re sleepy.
As I closed my eyes, I listened for a moment. There was no more gurgling, just the sound of Reed’s vent echoing through the monitor into my room. I considered it my new lullaby, and fell back asleep.
* * *
I entered my patient’s room and looked at her vent. She looked back at me and smiled.
“Are you the speech therapist?” she half whispered, half breathed.
“Yes,” I said, smiling back at her. My supervisor came up behind me.
“Have you ever worked with vents before?” the supervisor asked.
I nodded. “Yes,” I said. “Yes, I have.”
“Well, we haven’t had a speech therapist yet who has been able to work with this patient. She was in a car accident and was paralyzed a year ago. She hasn’t taken any food since that time. We need to know if you are comfortable feeding her. There’s nobody here who can suction her, though, if the food goes down into her lungs. Do you think you can handle this?”
“Yes, I’m comfortable with it,” I said. “And it’s okay. I can suction her if I have to.”
“Are you sure you can suction her?”
I smiled again.
* * *
The Christmas card was stacked among bills and junk mail, one of the first to arrive after Thanksgiving. I opened it and took out the picture of the Nixon family, with Reed in the center. Rob’s wife stood behind him, and the letter accompanying the picture described the family’s recent triumphs. Reed, after graduating from Bentley College, was trying to figure out what kind of job he could do without losing his benefits, and Rob was settling into a new job at an accounting firm. The family wore smiles, their easy expressions belying the great effort I knew it must have taken for them to get Reed up and dressed and in position for the camera. My own expression softened as I looked at the picture. I picked up a magnet and stuck the card in a place of honor in the middle of my refrigerator.
Reed and Rob Nixon were injured in a car accident in April 1995. Reed was 17, and Rob was 16. I lived with them from January 1997 to June 1998, almost exactly 18 months. After serving a mission in Massachusetts, Rob graduated from BYU and now lives with his wife in California. Reed, who continues to rely on ventilator assistance, resides in Northborough, Massachusetts. Both Reed and Rob are still quadriplegics.
Heather Oman lives in Virginia with her husband and two kids and a black lab. She is a licensed speech language pathologist, but spends most of her time making sure her own children say please and thank you. She is a member of the Segullah editorial board and co-founder of the blog Mormon Mommy Wars.