False Hope

On April 30, 1991, Dr. Hinchey walked into the I.C.U. room and said to me, “We only gave Mark a five to ten percent chance to live and given the extent of damage done to the brainstem, we do not expect him to come out of his coma. A tracheotomy is needed for people dependent on mechanical ventilation for a long period of time. Since we don’t expect Mark will be capable of breathing on his own, I recommend we do this procedure now.” Reaching up and pointing to the indent at the base of his own neck, he explained, “Through an incision in the neck we will cut in the front of the trachea and make a small hole for a trach tube.”

Trach tubeThe words were foreign—a tracheotomy and trach tube? In my nearly 32 years of life, I never knew or heard of anyone who had this procedure done. I might have learned about it in one of my health classes at school, but I couldn’t remember. As my brain scrambled in search for information to understand the meaning of a tracheotomy, what came to mind was a M*A*S*H episode on T.V. where Father Mulcahy performed an emergency tracheotomy which was guided by the surgeon Hawkeye over the radio. Great, my brain could only recollect a tracheotomy from a T.V. series filmed in the 1970 – 80’s based on three doctors in the Korean War on a temporary army camp.

Doctor Hinchey interrupted my thoughts by handing me the form to sign giving him approval to do the surgery. The M*A*S*H flashback made me appreciate the skilled doctor who brought me the shocking news and approval form to be signed. No matter how bad it seemed, I knew it could be worse. I was grateful the surgery was not being performed by an army priest getting directions over the radio by an absent surgeon. Fortunately, it wasn’t being done in a temporary operating tent which had several beds in it and usually a few operations going on at the same time in the same tent while the sounds of war explosions were in the background. Yes, life could be sadder.

TraceotomyMark survived his second surgery in three days, but seeing the plastic trach tube coming out of the base of his neck, which was connected to a ventilator, was unsettling to me. Mark was peacefully in a coma, unaware of the pumping sounds of the tubes which kept him alive. It was hard for me to watch the nurses when they came with a sterile container which held supplies to clean the tracheotomy twice a day. They had to clean around and replace the gauze under the curved wings on each side of the trach tube. This holder was secured in place by ties that went around his neck. The tracheotomy seemed invasive and the sight of it disturbed me, but the suction of his secretions was worse. I shuttered every time they used the catheter to suck out mucus and fluid.

I missed hearing his voice and now the tracheotomy made it impossible for him to talk. I kept hoping every day would be the day he’d wake up and end this nightmare. After a couple of weeks passed and he showed no sign of gaining consciousness, my dad and brothers took turns spending the night with Mark so I could go home to be with the kids. They often told me how much they missed Daddy and I’d tell them I missed him too. It was hard for a seven- and eight-year-old to comprehend how I could miss him because they knew I spent all day with him. It seemed strange to me also. They wanted to see him and asked me nearly every night when they could, but I was afraid the sight of the tracheotomy and other tubes would scare them.

Answering MachineOn my first night home, after the kids were in bed, I pushed the incoming message button on our telephone answering machine to listen to the messages recorded. After returning the calls, I pressed the outgoing message button to hear Mark’s voice on the second cassette tape. You’ve reached the Wilson residence. Sorry we missed your call. If you leave your name and phone number, we’ll get right back to you.” Tears escaped my eyes as I longed for him to “get right back.” This became my nightly routine. I loved hearing his deep voice while each word was pronounced clearly. I didn’t want to forget the sound of his voice and hearing it helped me sleep at night without him by my side. This simple, but now treasured recording made me feel close to him.

The longer he was comatose the less likely it seemed he’d come out of it, but as anxious and impatient as I felt to see his eyes and hear his voice, I realize he had too many serious health issues to wake up. I knew all his energy needed to go to fighting infections and healing his traumatic brain injury, but all the knowing and understanding didn’t stop me from wanting him to respond to me. Every day I’d read to him and hold his hand. I brought a cassette tape recorder from home and played his favorite music. I whispered sweet nothings into his ear, hoping he would open his eyes. When that didn’t work, I tried provocative or shocking words. Anything and everything that I thought would arouse or surprise him to the point he’d open his eyes—but no response. I was powerless to wake him up, yet every day I tried.

My days were filled with talking to the doctors, nurses and therapists caring for Mark. I got to know them and appreciated their skills. At least twice a day the physical therapist would do simple range of motion exercises to stretch Mark while we visited. I felt like I knew her pretty well after a month, so I was surprised to learn from a nurse that the physical therapist had a brain injury herself.

“I’ve heard you were also in a car accident a few years ago and were in a coma yourself for a short time.” I stated.

“Yeah.”

“Why didn’t you tell me,” I asked.

“My injuries were not as extensive as Mark’s and I didn’t want to give you false hope.”

“False hope? Without hope what is all this care for,” I asked.

I was hurt and discouraged. It seemed that not one doctor, nurse or therapist believed Mark would improve which felt like a betrayal. They were continually squashing my hope with their negative statements and statistics. Their knowledge kept him alive, but I began to realize that without hope for improvement, life would be worse than death…because this was no way to live!

Without hope life loses purpose. Is there such a thing as false hope?

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6 thoughts on “False Hope

  1. This is a thought provoking question for me now. I realize that for the first year, I don’t think I placed any expectations on Greg’s recovery. I lived one day at a time. Go to the hospital. Go to appointments. Work with him on his therapy. Go to my job. Cook for him. Encourage him. Love him. Watch him nap. Watch him play brain games on his iPad. Go for walks up and down the street. I just went through the motions.

    Then all of a sudden one day , he went to work for 3 hours. Pretty soon, it was 4 hours and so on. One day, he got his drivers license and a whole new world opened up for us. Our lives began to take on a different meaning. Independence crept back in piece by piece.

    I don’t think I ever had feelings that our lives would ever be the same because his physicians set me up from the beginning with cautious expectations. So hope? I tried to set the bar low and decided we would be grateful for whatever we were given. We (Greg) worked as hard as two people could possibly work with all the tools that the therapists had in their boxes and any more we found along the way. I believe it helps tremendously that we are hopelessly optimistic people! Just try and tell us we can’t do something, nope, not having it!

  2. I think being optimistic is the most important tool in the box. Optimism is the fuel for working hard. If you don’t think you can you’re right. Twenty-three years ago, I set the bar high. Part of it was my lack of experience with life, but I’m grateful and I’ve never regretted it. In fact I wonder where we’d be today if I didn’t have high expectations. We are all on a different journey with different experiences, however the feelings and emotions are the same.

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