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.

Welcome to Western Rehab

The sixty mile ride in the ambulance seemed so strange and unlike the ride I had the day of the accident. I was grateful to be in the passenger seat and not on the stretcher in the back. Both technicians were very friendly and asked lots of questions about the accident and our experience over the past seven weeks. It felt unreal as I talked to them about it. How could all of this have happened to me? Events like this happen to someone else, not me, somebody who is better prepared for it. When would I wake up from this bad dream? A sense of being stuck in it hit me hard.

Picture from http://www.healthsouthutah.com.       Formerly Western Rehab Hospital

Before I knew it we were pulling up to the entrance of Western Rehab. My excitement to finally be there turned to fear, like the first day of elementary school. You can hardly wait to go, but when you get there you realize you don’t know what it’s going to be like. My eagerness turned to worry as the EMT’s unstrapped the stretcher from the ambulance and wheeled it into the hospital. I hadn’t given much thought about what would be expected or how hard and painful it would be until we walked through the doors. Yes, I had taken a tour of the hospital and had met some of the staff before, but all that was discussed on that visit was the details of the facility and their therapy program. My confidence turned to insecurity as we approached the front desk to check in with Mark lying on the stretcher in a coma.

Picture from http://www.healthsouthutah.com. Formerly Western Rehab Hospital

The receptionist welcomed us and said Mark’s room was going to be in the special care unit right in front of the nurse’s station.  She directed us to go straight down the hallway. One EMT pushed the stretcher from the head of the bed while the other guided from the foot. My mother had followed the ambulance in her car and met up with us at the receptionist desk. As we walked by Mark’s side, I noticed a man in a wheelchair with his head bolted to a halo. The sparkling clean, wide tile hallway seemed filled with pain and suffering. I was overwhelmed by what some of the patients were enduring. Sights of treatments for injuries I had never seen before. Would I get used to seeing discomfort, agony and grief? Mark was in a peaceful coma; what would his recovery be like? Am I strong enough to handle it?

As we approached the nurse’s station we were greeted by Rita, a cheerful, friendly nurse who escorted us to Mark’s room. While the EMT’s were getting Mark transferred from the stretcher to the hospital bed, Rita opened the closet door and said, “Bring some clothes for Mark because we plan to dress him every day. He will need loose fitting pull over shirts and pull on pants with high top shoes. Socks and underwear can go in these drawers, along with any other personal belongings you want to bring,” she said as she pulled out one of the drawers on the left side of the closet.  She pointed to the white board on the right side of the closet. “This will be Mark’s daily schedule.” Written on the board was:

Therapy

9:00 am OT – Cheryl

10:00 am Respiratory

11:00 am PT – Leslie

Noon – 1pm – Rest

1:30 pm  Speech – Chris

2:00 pm OT – Cheryl

3:00 pm PT – Leslie

4:00 pm  Respiratory

4:30 pm Speech – Chris

10:00pm Respiratory

Sitting Up

Up – 11:00 am                   Down – 12:00 pm

Up – 2:00 pm                     Down – 4:00 pm

Up – 8:00 pm                     Down – 9:30 pm

Wow, what a busy schedule. How can Mark do all that? At McKay-Dee Hospital Mark didn’t have a set schedule, so I was thrilled they thought he could do it, yet flabbergasted at what seemed unrealistic.  In my mind I could see the doctor at Mackay-Dee Hospital, saying “I tried to tell you it’s too soon.” I pushed the thought out of my head as I remembered my first day of school and the overwhelming feelings of schedules and expectations. However, from the past I’d learned I could adapt, so I silently committed to help Mark in every way adjust to this new schedule and meet their expectations.

I was familiar with the range of motion routine the Physical Therapist (PT) would do with Mark at McKay-Dee Hospital, but I couldn’t imagine why he needed a Speech Therapist (ST) or an Occupational Therapist (OT).

“What will Mark do in speech therapy while he’s in a coma and has a trachea tube?” I asked the nurse as she detached the tube from the portable ventilator to the stationary hospital ventilator and hung his IV to the post on his bed.

“The therapist will come by and explain what they will do in their therapy sessions and the doctor should be in any minute now. Make yourself at home and let me know if I can get you anything.”

I sat in the chair next to Mark’s bed and Mom took one on the other side. I looked at Mark and was relieved that the move appeared to go unnoticed by him. He slept peacefully through the ambulance ride and transferring from the stretcher to the bed. He seemed unaware of his new surroundings. I was grateful to be in our home town of Sandy, UT.

A young, handsome man walked into our room and introduced himself as Mark’s new neurologist, Dr. Wright. He reviewed the reports he’d read  from McKay-Dee Hospital with us and we discussed the  treatment plan. His mannerism was gentle and compassionate. Immediately I felt at ease with him and confident Mark’s recovery was in good hands. He explained Mark would be completing the powerful intravenous anti-biotic in five days and he ordered all therapies to be done in his room until then.

“What will they be doing in respiratory therapy?” I asked, pointing to the schedule.

“The therapist will keep the tracheotomy cleaned and gradually turn down the ventilator, weaning him off of it. The respiratory therapist will help Mark learn to breathe on his own again.”

“What about speech therapy?” I asked.

“They use objects like bells and whistles to try to get Mark to respond to them.”

“Cool,” I said, hopeful and excited. This staff is planning for him to come out of his coma!

Our Children’s First Visit

While holding Mark’s hand and telling him about Western Rehab I felt him lightly squeeze my hand. Shocked and elated at his first movement in over six weeks I asked, “Did you just squeeze my hand?” I felt him squeeze it again. I grabbed the first nurse I saw and told her the good news. Skeptically she came into the room, took Mark’s hand and asked him to squeeze it. He did not. She looked at me and said sympathetically, it must have been a reflex without purpose. I knew differently.

When Dr. Hinchey did his morning rounds he said, “There is no change in Mark’s prognosis. He is still one point from being brain-dead and that point comes from his eye movement.”

“How can you say that? He just squeezed my hand.”

“If he can’t do it on command, it’s a reflex without purpose.”

Thinking, I’ve got to get Mark out of this negative environment, I asked, “Now that Mark’s red and white cell counts are getting in the normal range, how soon can we move him to Western Rehab?”

“I don’t know. We need to finish the treatment for his liver infection,” Dr. Hinchey said.

“Our children are out of school now and it’s hard to be this far from home. They ask me daily when they get to see their dad. When will that be possible?”

“They can come, but they will have to wear a mask over their mouth and wash up thoroughly before they come in the room because any infection would be deadly for Mark.”

It had been a long six weeks for me, but for a young seven and eight-year old child, it seemed like forever since they’d seen their dad.  They were anxious, but I was worried how their young minds would interpret the sight of their dad with all the tubes and equipment which kept him alive. I talked to the social worker about how I could prepare our children for their first visit.

“I can take them on a tour of the hospital first,” he said. “This will get them familiar with the sights, sounds and smells of the hospital. I can also show and tell them about the equipment which is helping their dad right now.”

That night I told the kids they would get a tour of the hospital and be able to see their dad tomorrow. They were excited, even though they knew he was hurt and he wouldn’t be able to talk to them. I talked to them about his special bed and equipment, but nothing could really prepare them for what they’d never seen before.

I’m sure the tour of the hospital helped, but Christopher and Katie were stunned when they walked into the room where their dad lay unconscious. At the first sight of him they stopped in their tracks and with unbelieving, widened eyes looked at him. The surgical masks they were required to wear in his room hid their opened mouths. Afraid to get any closer, they stayed just inside the doorway, speechless.

Katie recalls in her article written on June 17, 2014, Dad Creating Beauty After Tragedy, “My excitement shattered when I walked into his room. The man I once saw smash his finger with a hammer without shedding a tear lay helplessly unconscious. Tubes connected his lifeless body to machines. He was dependent on technology and the care of others. It was my first time seeing him vulnerable. I was scared. I recognized his face, but how could he be my dad? My dad was strong enough to lift me onto his shoulders so I could see parades over large crowds. My dad did sit-ups every night with his toes tucked under the couch as I sat on it and counted his sit-ups aloud. My dad killed spiders for me and read bedtime stories to me. I didn’t want to go near the lifeless body in the hospital bed.”

July 1991, first picture with the kids after the accident.

With all my heart and soul I wanted to make this better for Christopher and Katie. I knew they needed to see him to understand how hurt he really was and why he wasn’t home, but I disparately wanted to protect them from the worry.They were so innocent and I knew they’d be disappointed.

It was a Friday and my turn to stay overnight at the hospital, so my mom took the kids to spend the night at her house. I was constantly torn between Mark and the kids. I wanted and needed to be with each one, but it was impossible. No matter who I was with I was worrying about the other. I could hardly bear that we weren’t together as a family and had sixty miles separating us.

The small Ronald McDonald house which was close by the hospital parking lot became my home away from home. It had two bedrooms, one bath and living room complete with a couch, and reclining chair. The kitchen had a fridge, stove, a few dishes and utensils. In the beginning, I was in the basement of this home, but there was a plumbing issue so I had to move upstairs with the Call family who were from Idaho. Donna and Wayne Call were a little older than my parent’s and they had six kids with their youngest being close to my age. Wayne had a heart attack and after surgery he didn’t regain consciousness and was transferred to McKay Dee Hospital. Donna and I became close, despite our age difference. She was always at the hospital and her kids took turns bringing her needed items and staying overnight with her. I was given one bedroom and the Call family had the other. Each bedroom had a double bed plus a bunk bed in it, but with my broken collarbone I was more comfortable sleeping in the reclining chair. Sometimes my parents stayed there with me and on weeknights my brothers were there. The Call’s also had several family members coming and going and once in awhile it was such a full house they used sleeping bags on the floor in the living room. We got to know each other well over a seven week period of time. The Call’s made me feel part of their family. They would come to Mark’s room late at night to get me and to make sure I made it to the McDonald home safely. They were kind and thoughtful. I appreciated their friendship and we had a lot in common with our loved ones in critical condition. I was grateful for the comfort of this home which became a safe haven from the upset of the hospital. Amongst the turmoil and worrying about Mark as well as missing my own home and family I received the blessing of new friends and resilient children who quickly overcame their fear of seeing their dad.

Acceptance of an Unwanted Necessity

It was worrisome that Mark had been in a coma for so long, yet I was grateful he appeared to be resting peacefully through the emergency health crisis. His world seemed serene compared to mine. If only I could feel the same tranquility he looked like he had. Maybe being in a coma was a blessing in disguise, yet I wanted him to wake up more than anything and did all I could to make it happen.

Six weeks had passed and time to have an x-ray on my collarbone. It had healed well, but I had a floating piece of bone from the break, which felt like a stone in my shoulder area. It was bothersome at times, especially when it was touched, but the doctor reassured me it would disintegrate within five years. He said I was free to go without my sling and brace. As much as I looked forward to that day and suffered wearing the brace because it caused sores on my armpits, I felt like I would fall apart without it. Strangely, it took a few days to feel comfortable with no brace and sling for my arm.

With freedom to move my arm I was capable to drive a vehicle again. However, I needed a car to do that and my confidence in driving was ruined in the car crash. Although I hated to depend on others to get me to the hospital, I had no desire and even stated many times that I would never drive again. This must have worried my folks. They had always taught me, when you get bucked off of a horse, you get right back on and ride again, but this was different, or was it? I wasn’t only bucked off—I felt trampled on.

Mom and Dad’s car was a gray 1979 Caprice Chevrolet. They bought it new and took great care of it and had recently put a new engine in the twelve year old car. I didn’t know they were thinking of getting a new car so I was surprise one day when Dad showed up at the hospital excited for us to see the new car he’d just bought. It was at the end of the day and time to go home so we said our good-byes to Mark and walked outside to see the new car.

“We want you to have the Caprice”, Dad said as we walked outside.

“Thanks, but I really don’t want to drive.”

“I understand, but you have to in order to get where you and the kids will need to go,” Mom said.

As we approached the cars I could see they had been busy spiffing up the old car and getting all their personal belongings transferred into their new one. It was freshly washed and vacuumed.

“I think you should drive home from the hospital today,” Mom said as she handed me the keys.

“Okay,” I said apprehensively, wanting to please them and show my appreciation for their thoughtfulness. Dad took the passenger side of their gray car, while Mom said she’d follow us in the new one. I took the seat behind the wheel for the first time since the accident. Terror ran through my blood at every stop sign and signal, but I tried to stay calm, cool and collected just as my dad was. By the time we reached the freeway, the fear lessened some. I felt awkward—like the first day of drivers ed. It was a long sixty minute drive, but being behind the wheel made it seem like forever. I didn’t say a single word, just concentrated on driving and staying composed. Dad probably gave some instructions and encouraging words, but all I remember is driving in silence. Not even the radio was played to distract me.

Having a car for me to drive made it possible for Mom to be with the kids during the day since they were now out of school. The next morning before pulling out of the driveway I prayed for my safety. It was my first trip to McKay-Dee Hospital alone. By the time I reached the freeway, I was overcome with grief, fear and loneliness. Can I really do this? I had to pull off the freeway and park because I was afraid my tears would cause an accident. Ashamed of myself, I thought, what must the people be thinking as they drive past this car with a lady sobbing in it? You must pull yourself together and get yourself to the hospital now. Mark needs you.

I dried my tears, took a deep breath and accepted that driving was an unwanted necessity. Before getting back on the freeway I asked God to help me overcome my fear of driving and when I arrived at the hospital safely, I thanked Him for His comfort.

The only thing I was sure about in our uncertain circumstances was that I needed to get Mark closer to our home in Sandy, Utah. The hour drive to and from the hospital daily was hard on me and my family. My days turned into looking for the best hospital closer to home. The social worker at McKay-Dee Hospital put me in contact with several representatives from different hospitals which specialized in rehabilitating people with traumatic brain injuries (TBI). After gaining information on what each facility offered, I chose three of the best options.  Mom and I went to the facilities to personally meet the staff, see the rooms and the equipment. I chose Western Rehab not only because it was located in Sandy, Utah, but it was clean and had a great reputation for rehabilitation which specialized in TBI and spinal cord injuries. I was excited to get Mark moved and hoping that a rehab center would be more encouraging about Mark’s recovery.

 

Craig and Lynne’s Story

 

My ninety-one year old Grandma Rose was a neighbor of the Zabriskie family. She had heard about a boating accident their son Craig had which resulted in a traumatic brain injury (TBI) in 1990. He was progressing well in rehab at McKay-Dee Hospital at the time of our car accident. My caring grandma knew that if I could meet Craig and Lynne, their experience would be helpful and give me hope. She asked them to stop by and see me sometime when they were at the hospital. I remember our first meeting just a few weeks after our accident. I learned that Craig was in a coma for five weeks. I thought Mark will not be comatose for that long. Craig was using a walker. I thought Mark will never need a walker. One might say I was in denial; I would say I was adjusting to a shocking twist of fate which I was not prepared for.

Lynne visited with me a few times while Craig was in therapy. She had a better understanding of what I was going through than I did. She had seven months of experience with TBI at the time. She recommended helpful books for me to read. After Mark left McKay-Dee hospital we kept in touch through cards since email was not widely used at that time. We have in common a love and heartache for wonderful men who are survivors of TBI; we are close in age and have the same number of kids. For more than twenty-three years they have been our mentors and one of the few marriages I know which have endured the trials of TBI. Their story is amazing and Lynne has shared it in a book, The Lost Season. They are one of many special people we’ve gotten to know on this journey and I’m grateful for their example and willingness to share their story on Uniting Caregivers.

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KSL report written April 14, 2009

BOUNTIFUL — A former high school athlete and former high school cheerleader had it all: two beautiful children, a thriving business and a terrific marriage. One afternoon on Pineview Reservoir changed their lives forever.

Lynn Neerings and Craig Zabriskie began dating their sophomore year at Bountiful High School. Neerings was a cheerleader and Zabriskie played baseball for the Braves in the 70s.

“Craig was the all-American kind of guy and Lynn the cheerleader, so they were perfect together,” said former classmate Bob Grove.

The pair married in 1980. Over the years, they had two daughters and Craig had a thriving mortgage business.

Their life took a dramatic turn on September 11th, 1990 on Pineview Reservoir. Another boat hit Craig while he was waterskiing.

“And unable to hear our warning cries, I watched helplessly as the boat slammed into my husband,” said Lynn.

The couple estimates the boat hit Craig going 40 miles an hour, and the impact to Craig’s head was closer to 60.

Twenty minutes later at McKay-Dee Hospital, Craig had slipped into a coma.

“When the doctor came in he had x-rays and told me his brain had just shut down, but there was some activity and he probably wouldn’t make it through the night. Or if he does, he won’t remember you or the children or he’ll never walk again,” Lynn said.

After five weeks in a coma, Craig finally woke up. “They had him sitting in a wheelchair, and I knelt down and said, ‘Craig, I’m Lynn, your wife.’ Unable to speak because he had a trach, he leaned towards me and kissed me. He remembered,” said Lynn.

Craig doesn’t remember anything from the accident, but he knew right away life would be drastically different. Ironically, Craig signed up for long-term disability insurance one month before the accident.

He said, “I just had a great life, and after the accident, it was like everything was taken from me.”

To get back, Craig would endure grueling rehabilitation. He had to re-learn to walk and re-learn the alphabet. He even had to teach himself how to write with his left hand after being right-handed his entire life.

“They put a pen in my hand and said, ‘Write your feelings, write everything.’ So to this day I write down everything,” he said.

Lynn became a writer, as well. She put their story into a book called, “The Lost Season.”

“Our goal is to help everyone out there know that life is not easy, but you can overcome no matter what life brings you,” Lynn said.

Life for Craig, now 52, includes continual therapy. One of the first things his therapist recommended was racquetball, a game Craig played for years before his accident.

“I play with two rackets, one in each hand. I serve with my right and kill with my left,” said Craig.

Craig is also a regular at Gold’s Gym where Lynn teaches aerobics. Though he can no longer work, he says life is great, despite what happened.

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I’m grateful Grandma had the foresight to ask the Zabriskie’s to visit me.Their friendship has enriched my life. For more information or to order their book go to  www.TheLostSeason.net.