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!

The Move

After the doctor left with the agreement that Mark’s update reports would take place in the conference room in the future, I returned to his bedside. I held his hand, hoping to feel his spirit. Where are you Mark? Are you trapped between two worlds? Am I going crazy and imagining movements just because I want to see them? A thought came to mind, or possibly his spirit answering me, all energy is going to fight the infection and blood clot. Maybe, a coma is the best place for me right now.

Intermixed with all the worries, the improving numbers in his red and white cell counts were triumphs in my mind, along with his temperature and heart rate going down. With each passing day I was getting more and more anxious to move Mark to a rehab hospital closer to home.

The therapists were getting Mark out of bed two or three times per day now. After several weeks of lying in bed it was refreshing to see him sitting in a reclining wheelchair. Sometimes when his eyes were open, there was a blank stare. Other times I could see he was focused on something. However, every time he was moved, his eyes grew wide and he looked terrified. I felt and understood his fear. He had no control over his body and where it would land. I knew he was aware of the movement; I saw it in his eyes. In a soothing voice, I tried to reassure him everything would be okay.

One day I walked from one area in his room to another and noticed his eyes followed my movement. I walked a little farther away and lost his focus. When I got closer to the bed, I knew he could see me again and as I moved from the left side of the bed to the right side, he lost focus again. As I watched him from his right side, it appeared to me he was searching the left side to find me. I tested this a few times, moving from one side of the bed to the other. I was positive he could see me on the left side, but for some reason could not focus on me when I was on his right side. Every day I read to him and we listened to his favorite music on cassette tapes.

Christopher and Katie were now out of school and my mother was with them most days, but on the morning of June 12, 1991 she came early to be with me for the doctor’s report. Quickly walking towards the conference room she said, “Hi Mark,” as she walked past his room. Mark turned his head towards the door, obviously recognizing his name and her voice. A nurse was following behind her and somehow missed seeing his reaction, or at least wouldn’t admit to seeing it. In the conference room Mom told the doctor she was sure he recognized his name and her voice and he responded. The doctor and nurse would not agree that Mark’s response was worthy of any progress notation.

I was anxious to move Mark to Western Rehab Hospital for several reasons. It had a wonderful reputation for specializing in spinal cord and traumatic brain injuries and it was close to home. They only had a few beds available at the time and I was worried they’d be full when the doctor released him from McKay-Dee Hospital. The sixty mile daily commute to and from the hospital became increasingly difficult with the kids out of school and the frustrations the doctor and I felt for each other were becoming intense.

“When will Mark be released to go to Western Rehab,” I asked again.

“I don’t feel he’s should be moved yet.”

I reiterated my reasons for being anxious to move Mark and recounted all the positive improvements we had seen in the past ten days, including the response my mom had just had.

Exasperated, he said, “Well, if you’re so smart, why don’t you take him out yourself?”

Surprised by his statement, I asked, “Can I do that?”

“Yes. I don’t recommend it and you’ll have to make the arrangements yourself, but you can do it.”

“I’ll do it,” I exclaimed.

I was elated when I called Western Rehab to verify they had a bed for Mark. They helped me arrange for an ambulance to transport him there and requested the medical records from the hospital. I hadn’t been this excited since the car accident. While Mark was sitting up in the reclining wheelchair, I trimmed his beard, shaved his cheeks and gave him his first haircut since they shaved half of his head for the shunt placement, which had now been removed. All trimmed and shaved he looked better than he had in seven weeks and I was confident he was ready to move on to this next stage of his recovery. That night Dad came by the hospital and I asked him to give Mark a special blessing that all would go well with the transfer.

Saying good-bye to the Call family, whom I had shared the McDonald House with and the Peek family, who were residents of Ogden made leaving the hospital hard. These two families had become my hospital family. We spent many worrisome hours together in the waiting room while our loved ones were in ICU. We ate meals together, attended church services at the hospital and shared tears over concern for our loved ones. I knew I’d miss their love and support.

I didn’t take my decision to move Mark from the hospital lightly. I wanted to make sure everything went as smoothly as possible and was hoping I could ride in the ambulance with Mark to Western Rehab. Mom knew of my desire and was supportive in every way, so the next morning she drove me to the hospital and waited with me for the ambulance to arrive. Two EMT’s came to the room and with a white sheet under Mark’s body, they pulled him from his hospital bed onto the stretcher. The IV bag was moved to a pole on the stretcher, while his trachea tube was attached to a portable ventilator, which was placed at his side.

“May I ride with him in the ambulance,” I asked.

“Yes,” said one of the EMT’s, “you can ride in the passenger seat.”

As excited as I was to get Mark out of this hospital and closer to home, I felt intense gratitude towards the team of doctors and nurses for saving his life. I thanked each one of them as we gathered his medical records and packed up the last few personal items before walking out the door. I was leaving the hospital a changed person, realizing Mark’s life and recovery was now my responsibility. I was confident in my decision, but the accountability weighed heavily on my mind.

The Inside Story

I’ll be willing to bet no one gets excited about having a colonoscopy. A look inside with a scope doesn’t sound fun, but no food for a day and a prescribed drink which is meant to give you diarrhea sounds even worse. It’s unpleasant enough when you can get yourself to a toilet, but when you have to count on someone else to get you there…it’s horrifying for you and your caregiver. Ten years ago Mark and I were unfortunate to have such an experience. After a dreadful day and night of cleansing and no sleep for either one of us, we were sent home for another day of it because Mark was not completely cleaned out. That dreadful day turned into two with the end (no pun intended) result of a completed colonoscopy with two polyps removed and the recommendation to come back and repeat the procedure in five years.

The years passed quickly and I still shudder at the memory of it. I didn’t want to ever relive that experience, so we didn’t follow the recommendation. However, for the past five years it was always in the back of my mind, haunting me because I knew it was something we should do for the sake of good health.

Last year while Mark was hospitalized for blood clots, a shiver ran down my spine when the doctor asked when Mark’s last colonoscopy was. To justify my guilt for not taking him in as recommended, I retold how horrifying the cleansing experience was for both of us. He said, “You know, under these circumstances they can do the preparation in the hospital.”

I thought, why wasn’t I told this before or even after the previous colonoscopy? I guess no one thought about how useful that information would’ve been, so I just said, “Great, let’s get it done.”

“We can’t do it now with the blood clots and the anticoagulation medicine (warfarin) needed to treat them. He will have to wait at least a year before we can consider even taking him off the warfarin long enough for the procedure,” the doctor said.

So for the past year I’ve been worrying about this procedure and the ramifications of putting it off for so long. A few weeks ago Mark had another doctor’s appointment and ultrasound on his leg where the blood clots started. There was still evidence and scaring of the blood clots, but the doctor felt like Mark would be fine to be off of the warfarin for five days prior to the colonoscopy. Before we could change our minds, it was scheduled for November 7, 2014.

Mark was able to have a light breakfast on November 5^th. One piece of toast and two eggs were allowed. At 11:00 am he was admitted to the hospital for two days of no food and drinks mixed with the intent to clean him out completely. Most of us only need one day, but due to our past experience and his limited activity, he was scheduled for the needed two days. Finally, the waiting and preparation was over and we were anxious to get this procedure behind us. With great anticipation, I followed the nurses as they pushed Mark in the hospital bed down to the procedure room. The doctor explained it should only take a half hour to do the colonoscopy. An hour later the clock ticking became louder and with every tick my worry increased to a higher level. An hour and a half later the colonoscopy was completed with one large, but assumed noncancerous, polyp was found and removed.  After the biopsy is analyzed, the doctor will call us and confirm the results.

“In all my practice, Mark’s colonoscopy was the hardest procedure I’ve ever done. His colon is elongated and floppy due to his inability to be mobile, making it hard to get the scope through.  We tried three different scopes and still couldn’t get to the end of it, meaning we didn’t see the last six to eight inches of his colon. I’m not sure when I recommend we do this again. Let’s wait until we get the results from the biopsy and then we can discuss when you need to come back.”

I don’t know if I should feel relieved, but I do. It’s over and I believe the doctor is about as anxious as we are to do it again.

 

The Dreaded Phone Calls, part 1

April 27, 1991

My parents anxiously rushed towards me “Are you okay? What happened?” they asked.

I told them about the car accident and how Mark was unconscious and was now in surgery getting a shunt to relieve pressure on his brain.

The receptionist pointed us in the direction of the intensive care waiting room and Mick spied a phone in the hallway near the waiting room. “I need to update Dianne and she can let the rest of the family know what’s going on.”

“Please do,” Mom replied, “We’ll be in the waiting room.”

“I want to call the kids, but I’ll do it when Mark’s out of surgery,” I said.

Dianne, called her daughter, Linda, to let her know it would be a late night with our kids. She also called my only sister, Rosanne, and my brothers, Don and Steve, to inform them of the details of the accident and our condition.

While in the waiting room, Mom and Dad noticed how uncomfortable I was with every breath.

“I think you should go back to the emergency room to make sure the doctor didn’t miss another problem. I’ll wait here in case the neurosurgeon comes while you’re gone,” Mom said.

“I don’t want to miss him.”

“If he comes, I’ll make sure he finds you in emergency to update you on Mark’s prognosis.”

I nodded in agreement. Dad grabbed a hospital wheelchair from the hallway and quickly wheeled me back to emergency room.

“My daughter’s breathing is uncomfortable,” he explained to the nurse at the station. “Could you make sure there’s not another problem?”

“Sure,” the nurse replied as she took the wheelchair and wheeled me in for more x-rays, then back to another room where my Dad and I waited to hear the results. Time seemed to be passing at a snail’s pace, but finally a doctor arrived with the results of the x-rays.

“Your lungs are clear and your heart is fine. There are no broken ribs. Your pain is coming from your collarbone, which is broken in two places, and the extensive chest bruising. The nurse will bring you some pain medication for now and here is a prescription to fill later.”

“I can’t take any medication,” I said. I already felt foggy and was afraid it might cloud my thinking. “I need to be alert so I can understand what’s happening.”

The doctor raised his eyebrows and looked at me skeptically. “Well… your choice, but in case you change your mind…” he said as he handed me the written prescription.

“Thanks,” I replied.

Dad wheeled me back to the I.C.U. waiting room.

“Hasn’t the neurosurgeon come yet?” I asked Mom.

“Not yet”

“I should call Mark’s mom,” I said. How do I tell her that Mark is not expected to make it through the night? What words would ease the blow?

Wanda lived in Vancouver, Washington about 785 miles away. Mark adores his mother and never uttered one negative word about her. She’s smart, witty, soft-spoken, and devoted to her three children. Mark was her only child for ten years and he enjoyed the undivided attention. I respected Wanda and appreciated her influence in raising such wonderful man. Now I was afraid she might reject and blame me and I felt she had every right to do so. Feelings of guilt and remorse about the car accident filled my soul.

Dad realized my anguish and offered to make the call, but I wanted to — or at least I felt like I should be the one to tell her. Dad pushed me in the wheelchair from the waiting room into the hallway to a small cubical with a phone sitting on a desk with a chair. I looked at the phone and feared I’d fall apart. I didn’t have the strength to pick up the receiver. Disappointed in myself I asked Dad if he’d make the call for me.

When there was no answer at her home, I remembered Wanda told us she was going to Arkansas to visit her parents and brother. I didn’t have Uncle Glynn’s phone number, but I did have Mark’s sisters phone numbers in my purse.

Being the big brother, Mark felt protective and proud of his sisters Karen and Jerrie. Even though they were only ten and eleven when he moved to Utah with his employment he kept track of them the best he could long distance. It was obvious he cherished both of them. Karen married Mark Ray almost two years prior to the accident and we had just been to Washington in November for Jerrie’s wedding to Jon. I was worried how they might react to this devastating news.

I sat in the wheelchair next to Dad, listened to his conversation with Karen about the accident, and then heard him ask for Glynn’s phone number. Without saying another word, he picked up the receiver again, dialed 0 to talk to the operator to have the long distant call billed to his home phone number.

I nervously listened as I heard Dad introduce himself to Glynn, whom neither of us had ever met, and then ask if Wanda was available to talk to. Next I heard Dad recalling the accident details and grim prognosis the doctor had given. He told her Mark was in surgery getting a shunt to relieve the pressure from his brain and that we would update her after the surgery.

I sighed with relief—Mark’s family now knew and seemed to be handling the news in their usual gracious way.There was one last dreaded phone call to make and I cringed at the thought—our young children still didn’t know.

The last Wilson family picture before the accident.

Mark Ray, Karen, Wanda, Mark, Barbara, Grandparents- LaFaye, Norval                                   Jerrie, Jon, Katie and Christopher – The Wilson Family – November 1990

Next week’s Sunday Story will be part two – how I tell Katie and Christopher.