The Roller Coaster

Enthusiastically, I walked down the hallway of Western Rehab. I was anxious to see Mark and wondered what new words he might say to me today. After hearing him say, “Love ya back” and “I love you,” three times the night before, I was hopeful he’d be even more alert this morning. The hallway seemed longer and brighter and I couldn’t get to his room fast enough. I was tempted to run down the hallway as our children often tried to do, but since I wouldn’t allow them, I decided it wouldn’t be appropriate for me to do it either.

To my dismay, I walked into Mark’s room and the nurse told me he had a fever and his heart rate was fast. He had an infection and the doctor was investigating the source. They pulled the catheter from his bladder and replaced it with a condom catheter in hopes the infection would clear up. Mark was totally unresponsive that day. Even when the kids came to visit that night, there wasn’t the usual blinking of his eyes to their yes and no questions.

We thought the intravenous antibiotic must be working because the next day when my mom brought the kids to the hospital for a visit, he was answering some of their questions with the routine blinks of his eyes. When they kissed him good-bye, he surprised each one with a soft, tranquil, “I love you.” Overjoyed by words that are so often taken for granted, the kids skipped out of the room wearing ear to ear grins, each holding Grandma’s hand. Mark slipped back into his deep sleep.

“I think what Mark needs is a feeding tube placed directly into the stomach through the abdominal skin,” Dr. Wright said.

“I would hate for him to have another surgery. He’s getting better. He’s breathing on his own now and responding appropriately to questions with blinking. I’ve heard him say, ‘I love you’ to me, the kids and my mom. I don’t think he’ll need any feeding tube much longer.”

“Yes, he is getting better, but we don’t know how long it will be before he can chew and swallow. It may take some time before he can get enough food or liquids by mouth.”

Relearning to chew and swallow never entered my mind. These things we do automatically. Wouldn’t it just come back to Mark naturally? Fear crept in, would he have to relearn everything?

Mark’s fever persisted over the next few days and despite the intravenous antibiotics, he developed pneumonia and was moved to the Special Care Unit. The respiratory therapists were giving Mark breathing treatments and regularly rolled him on his side while rhythmically patting him on the back, trying to get him to cough up the mucus. Unconscious, with a feeding tube and oxygen in his nose, I could see the difficulty in his breathing as I observed his rapid chest movement. I knew pneumonia could take his life. He had already lived eleven weeks longer than the neurosurgeon expected, surviving a shunt surgery and a tracheotomy, which both had now been removed. Could he survive another surgery and was it absolutely necessary? He successfully fought the liver infection, why couldn’t he overcome this one? I’ve heard pneumonia called “the old man’s friend” in cases when it cuts short the suffering associated with lingering illnesses or injuries. Was Mark tired of fighting infections while trying to heal from broken ribs, a collapsed lung and most concerning to everyone, his traumatic brain injury? I couldn’t blame him if he wanted to give up. I was tired of being stuck on this roller coaster myself. Not enough ups and too many downs. This definitely wasn’t the ride we wanted or expected. How much more can we endure with no end in sight? Where do we get off and how can we do it?

The only thing I could think of to make Mark more comfortable was to rub lotion on him. I was raised in the dry air of Utah and being an Avon Representative, I was familiar with their skin care products and a believer in their benefits. I rubbed his feet and hands regularly. Like a snake shedding skin, Mark’s callouses were peeling off. His new skin felt baby soft. A nurse walked into the room to take Mark’s vitals and she admired how well the product was working and how good his skin looked. Impressed, she asked me to order her some of that lotion. As soon as she walked out of the room, Mark spontaneously said, “Way to go.”

Where did that come from—my imagination? I stopped rubbing his foot and asked, “Did you just say way to go?”

“Ya. On your sell.”

This was typical of Mark, usually a supporter and cheerleader of mine, but I was shocked by his matter-of-fact reply. He heard and understood the conversation. Although his response was delayed, it came naturally. I wanted to call the nurse back so she could see and hear Mark, but I was afraid he would drop back into unconsciousness before she arrived. I took advantage of the moment by asking questions that required more than the typical yes, or no answers he was used to hearing and answering with the blinks of his eyes.

“Who I am?”

“Barbara.”

“How are we related?”

“You’re my wife.”

“How many kids do we have?”

“Two.”

“Can you tell me their names?”

“Christopher and Katie.”

“What pets do we have?”

He closed his eyes without an answer. I knew he was sick and exhausted. This was the most he’d spoken in months, but I didn’t want the discussion to end. Frantically, I shuffled through the Reader’s Digest I had been reading to him earlier and found the picture of a cat that looked just like ours.

“Look at this picture,” I said as I nudged him. “Who does this look like?”

He opened his eyes again, looked at the picture and said, “Tom.”

“Yes, you remember.”

His eyes closed and he fell back into his deep sleep.

I knew the questions were simple with obvious answers from my husband of twelve years, but still, I was so relieved. He knew my name. He remembered the kid’s names and recognized a picture of a cat similar to one of ours. I literally jumped for joy and ran out of the room to find the nurse.

Anxiously, I told her the extent of our dialogue. “He knew and answered every question. He’s going to be okay; I know he will.”

“Yes he will,” she said, accepting my hope and excitement without trying to change a thing.

I was ecstatic, not only for Mark’s awareness and answers, but that someone besides family believed in us. Just when I didn’t think I could take another moment of the twists and turns and our lives being turned upside down on this roller coaster, I was blessed with reassurance that it would be a worthwhile ride. I just needed to continue holding on for dear life.

Closer to Home

by Katie, May 1991. One month after her 7th birthday. A picture of Katie and Christopher. Our cat, Spook in a picture on the wall. She expressed her biggest fear, “I hope you will remember us.”

Mark’s neurologist explained that it’s difficult for any physician to predict the outcome of traumatic brain injury. Along with family members, they have to “wait and see” how the patient progresses. They encouraged me to bring Mark’s favorite music and surround him with familiar people and things.  After meeting each one of the therapists assigned to work with Mark, Mom drove me home.  What a huge difference it made having him only 2.3 miles away. What used to be an hour drive to see Mark now took five minutes. This relieved the pressure of feeling like someone needed to be at the hospital at all times. Knowing I could get there quickly in an emergency lightened the stress. My dad, brothers and brother-in-law would no longer need to take turns spending the night at the hospital. I will be forever grateful for the weeks they did so.

May 1991, Christopher’s drawing of the swing set Mark built for the kids

I picked up the kids from the neighbor’s house and they gathered pictures they had drawn and colored for their Dad over the past seven weeks with get well notes to him. They were excited to decorate his room with them. Christopher put his prized pinewood derby car in a bag, along with the first place trophy he had won the week before. I packed up some family pictures, clothes and dinner for us to eat in Mark’s new hospital room. We were all anxious to be together again as a family and we went there with the intention of making Mark’s hospital room feel like a second home. Our excitement made the memory of their fearful first visit disappear.

At the hospital, the kids helped me tape their pictures on the salmon colored walls and closet door right in front of Mark’s bed. I put framed school pictures of the kids and some family pictures on the shelves above the drawers. We hoped these pictures would be the first thing Mark would see when he opened his eyes. While I placed underwear and socks in the drawers, I encouraged the kids to read to their Dad, which was the nightly routine before the accident. I hung a few pullover shirts and sweat pants in the closet before taking a seat in the room. There was a small, round table with only two chairs in the room. I asked  the nurse if I could bring in one more chair from the recreation room so we could each have one. The three of us sat around the table and we ate our first meal by Mark’s bedside. It felt so good to all be together again and the kids seemed to be happy to see their dad. Christopher pulled the pinewood derby car and trophy from the bag and set it on the night stand next to his dad’s hospital bed. A touch of home was now in the room. We knelt by his bed and said our prayers with him before leaving the hospital. This became our nightly routine which enabled me to sleep better than I had in the previous seven weeks. Having Mark so close to home was indeed a big blessing.

Struggling to understand this complicated condition, I made sure I was at the hospital every morning for Mark’s therapies. On my way, I would drop the kids off at the neighbor’s home or my parents would take them to their home or their cousin’s home to play for the day. Before dinner, I would pick up the kids from wherever they spent the day and we’d take dinner up to the hospital. After our meal together, the kids would play with the other children in the hospital playroom; some of them were patients while a few were visitors. They enjoyed playing and helping the children. The nurses and aides were friendly and caring in helping our children adjust to our new situation. They helped the kids become comfortable in the hospital setting, encouraging them to sit in the wheelchairs and learn to maneuver them.

The uncertainty of Mark’s health condition was frightening. Each family member and friend dealt with this crisis in his or her own way. Being responsible for Mark’s well-being,  I felt an urgency to learn everything about his condition so I could make wise choices in his behalf. All the stress and worry made it difficult for me to concentrate and remember explanations given to me. Keeping a journal of events, feelings, concerns, and questions became my way of coping. Overwhelmed, I felt the need to write down my questions and the answers I received from therapists, doctors and nurses. Some of the staff were fine seeing me doing this, while it made others feel guarded and suspicious of my motives. I was constantly taking notes because I didn’t want to forget what I was told and it helped me understand and stay focused on what I felt was most urgent at the time. I was aware of each staff member’s concern, but I just focused on the most critical ones at a time. I believed Mark would come out of his coma once his other injuries and infections healed, but for his therapists, the coma was the most concerning.

After three weeks of the powerful intravenous medication, Amphotericin B, Mark’s red and white cell counts were in the normal range and it was another victory to complete this treatment. The next focus for improvement was weaning Mark off the ventilator. The respiratory therapist came three times daily. I asked and kept record of his respiratory rate and the breaths Mark initiated on his own. I was encouraged every time the preset pressure value was turned down. After one week of weaning him off of the ventilator, the tracheotomy tube was downsized and a smaller tube was inserted. The smaller size allowed for the stoma site to shrink. The next step towards removing the tracheotomy was to plug it. The purpose of this cork was to insure that he was able to clear his own airway effectively without the need for suctioning. After a couple of days without any complications, the doctor ordered the trach tube to be removed. Glorious news, but I was taken by surprise when they pulled the tube out right there in his hospital room and then covered it with dressing and taped it in place. I was unprepared for the gasping, high-pitched sound he made and I panicked. It was hard to watch him struggle. The respiratory therapist kept a close eye on him and tried to reassure me the hole would close up on its own quickly. Since I had no previous experience with this, I doubted him. It was the first night since Mark had been at Western Rehab that I didn’t dare take the kids to see him nor did I want to leave him. Thankfully, Mom and Dad were able to keep the kids overnight and within twenty-four hours, Mark was breathing more easily all on his own.

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.”

The 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.

Mark 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.

On 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?