Challenged to Change

By changing ourselves for the better our situation can only improve. Sometimes our only choice is to change ourselves.

Essential Members of a Rehabilitation Team

On our first day at Western Rehab, I was introduced to a team of therapists and their schedule. It didn’t always flow as perfectly as it looked on the white board, but having a written schedule put order back into my life. It also brought hope for improvement and was reassuring. Even though Mark was still comatose, I felt a consistent routine would be helpful for him as well.

I had been familiar with physical therapy for the past seven weeks, but occupational, speech and respiratory were new for Mark. How important is therapy while a patient is in a coma?

image from dreamstime.com

Physical Therapy

Mark’s first therapy after the accident was with a physical therapist.  Right from the start they oversaw positioning in the bed and later got him up in a chair. The PT stretched his legs and arms to keep them flexible, doing range of motion exercises. Sometimes splints were used to help prevent foot drop, clenched fist or flexion of the wrist and elbow. They worked to keep the joints moving and the muscles from getting tight and stiff. As the patient progresses they work on strengthening, coordination and transferring. The ultimate goal is becoming as mobile and independent as safely possible.

Occupational Therapy

In the beginning, the therapist provides sensory and basic motor training therapy to keep the patient engaged in routine activities, even while in a coma. The repetitive motions help with the relearning process.  As the patient improves, the OT coaches the activities of daily living such as dressing, brushing teeth, combing hair and eating. A brain injury may cause these skills to be lost or compromised. They work to improve coordination, endurance and fine motor skills. They provide adaptive equipment needed such as specialized utensils for eating, bathroom equipment and wheelchairs.  The OT overlaps and supports both PT and speech therapists.

image from paraplegiker-zentrum.ch

Speech Therapy

At the first stage of treatment, the therapist focuses on simply getting a general response to sensory stimulation. This may include touching the patient’s hand, talking loudly into the ear or even letting the patient smell an object or food. As the individual processes they may also use a flavored sponge swab in the mouth to stimulate the tongue with something to taste.

The therapist also teaches the members of the patient’s family how to interact with their loved one by asking “yes” and “no” questions and reminding them to blink once for “yes” or twice for “no”.  Another method used was to raise one finger or two. Once the patient becomes more aware and responds to stimuli, the treatment focus is keeping the individual’s attention and informing them of the day of the week, date, where they are and why they are there. In time the therapist ask the patient those questions building their cognitive development. They not only work on speech, but writing, reading and expression skills aimed at both comprehension and communication.  For a person with a traumatic brain injury it may be difficult to pay attention. Organization, planning and sequencing skills may need to be relearned.  They specialize in teaching memory strategies for treating the classic problem.

Respiratory Therapy

A respiratory therapist evaluates the patient’s respiratory care, status  and treatment progress. They manage the ventilator, oxygen levels, aerosol medication treatments and  breathing exercises.

All therapists work closely with the family, doctor and nurses in a rehabilitation hospital, so they are informed of any changes and can help and encourage progress outside of the therapy session. The therapists also help educate the family on what their loved one might be going through and what to expect.

I greatly appreciate the professionals that are skilled in helping others regain abilities lost due to injury or illness. Mark has had many wonderful, hardworking and innovative therapists who have made a positive difference in his life and abilities. Social workers, neuropsychologists, dieticians, family and friends are also important contributors to a rehab team.

Did I miss anyone on your rehab team? How has therapy benefitted you or your loved one? Who made the greatest difference?

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!

Better is Best

Good, Better, or Best

As caregivers, we have many decisions to make in behalf of our loved one’s best interests. The responsibility weighs heavily as we ponder not only what is good, but what is best. How do we know if it’s the best choice? Sometimes we don’t even realize we have choices. For example, it never occurred to me that I could transfer Mark from one hospital to another without him being released. I admit I was young and inexperienced, however, when I was told I had the choice, I didn’t take the decision or the responsibility lightly. I knew I needed to move Mark closer to home because the one hour drive each way was difficult to make daily. My brothers were taking turns on weeknights to stay with Mark so I could go home to be with the kids. It was hard to be away from Mark when I was home and hard to be away from the kids when I was at the hospital. No matter where I was, sixty miles seemed too far away under such crisis.

I had toured three hospitals before choosing Western Rehab, which was close to our Sandy, UT home, but more importantly, they specialized in Traumatic Brain Injury (TBI). I was confident that Western Rehab was the best place for Mark. After I had made the decision, Mark got a terrible a liver infection, which almost took his life. The doctor couldn’t commit to a release date because it felt it was best for Mark to complete the powerful intravenous antibiotic for at least two weeks and make certain no other setbacks occurred. With each passing day that Mark improved, I became increasingly worried and anxious that Western Rehab would fill up all their beds and we’d lose or have to postpone the opportunity to move there. They only had two beds available when I checked them out.

When the doctor told me I could take Mark out of the hospital without his permission, I checked with Western Rehab to make sure they had room for him. Even though I believed this was the best place for Mark and I was anxious for the move, I also knew McKay-Dee Hospital had very competent and skill doctors and nurses. It was harder than I thought it would be to leave the hospital that literally saved Mark’s life at least twice. My appreciation for doctors and nurses along with the security of a hospital family that had seen me through some very worrisome times made it difficult to leave. However, having Mark so far away from home was even harder. I also had faith that a Rehab hospital which specialized in TBI would be a more positive atmosphere, which I believed would help him come out of his coma. These reasons outweighed my reasons to stay. It was difficult taking a new path because I didn’t know for sure where it would lead, but I also knew I couldn’t let the fear of the unknown stop me. I had to give up some good things in order to choose others that were better or best.

Three things to consider when choosing between good, better and best:

• Is it an emotional or logical choice? If it is both, it is best.
• What are the consequences? What could go wrong and how can you protect against it?
• Look at the big picture. Does it have long term benefits or just short term?

As Laura Nordfelt stated in her comment, “We can accomplish more than we realize when our loved ones need and depend on us. We can do things we never imagined.” I would add and make difficult choices.

What steps have you taken in deciding whether you have made a good, better or best choice? Have you ever had a choice and not realized it?

Related Article: Five Steps to Making Good Decisions

 

 

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.

Don’t Forget

 

Writing for Past, Present and Future

I appreciate the comments left after a blogpost. It’s feedback on how an article was received by a reader, which can be eye opening. I also enjoy answering questions. On my last post, Conflicting Viewpoints, a reader commented, “This all feels so traumatic to read. Do you ever get PTSD just writing this?”

My answer is a definite no. I find writing is therapeutic and I recommend it for everyone. Your style and story may be completely different than mine, but I believe no matter what you’re going through it can help you see things more clearly. There is an insightful power in writing down words which describe how you feel or what you want to accomplish. It assists in sorting out as well as improving the understanding of your feelings. Most of all it helps me to recognize my blessings as I objectively look at what has or is happening.

As soon as my collarbone had healed and my right arm was free from the sling, I started writing and keeping record of Mark’s progress. They were baby steps—small, wobbly with frequent falls, but through my writing records I could see the progress. At the time, writing it down helped me stay focused on the positive. I’m glad I have it now to look back on because it makes me realize just how far Mark has come and what a miracle his life and recovery truly are. I don’t want to forget where we’ve been because that would lessen the value of where we are.

Writing is a good way to plan for the future. When you want to accomplish something, writing it down is a first step in achieving it. After you write the goal, it becomes visible and clear, no longer just something you think about. Writing the plan will help you prioritize the order of steps needed to make your goal a reality. A person who is trying to lose weight will benefit if they record their weight and the food they eat. By writing it down, one becomes more aware of what they are putting into their mouth. No more mindless eating. Writing provides tangible evidence and can show you why you are or are not making progress. You guessed it—I’m a list maker for everything, from household chores to my work schedule, even writing down my exercise plan and accomplishments encourages me. I also believe there is a benefit in writing a meal plan, but I haven’t worked on that yet. That is my next goal.

Almost twenty-four years have passed since our car accident. When I look back, I rejoice in how far we’ve come. I’m in awe at how all the pieces came together to get us to the point we are now. Our trials and grief may come from different sources, but we all have them. My experience with writing about them improves our understanding and facilitates getting through them. I hope my writing encourages others, because if I can endure, I know they can. I don’t want to forget where we’ve been because when I’m discouraged about life, I can look back at what I’ve written and realize we’ve made it this far and that gives me courage to keep going.

Have you tried writing your story or a goal and steps to accomplish it? What impact did it have on you?

Conflicting Viewpoints

With my collarbone healed and my right arm free from the sling, I started writing daily notes about Mark’s progress. I recorded his red and white cell counts, temperature, heart rate and respiratory pressure support. I did this so I could recognize the improvements no matter how small they might be. It helped me stay focused on just parts of the recovery instead of thinking about everything Mark needed to overcome.

Mark’s white cell count was high and since the increase indicates an infection, they did a body scan. Mark’s liver was abnormal. With his weakened immune system, they treated the liver infection aggressively with a powerful intravenous anti-biotic because they were worried the infection would spread quickly to other organs, causing death. Within a week his white cell count went from 50,000 down to 11,000, which was an answer to our prayers. He was schedule be on this medication for two weeks with the goal range of 5,000 –10,000. In my mind he had almost reached the elevated end of the goal range.

With high blood sugar levels, Mark was now on insulin and with a large blood clot in his right leg, he was getting heparin. He was now in a floatation bed to help with the blood clot problem. There were so many health concerns that at times I thought I’d lose my mind from the anxiety. I found it helpful to write down the worries and the normal or goal range for his white and red cell counts, heart rate, temperature and the respiratory pressure support. I tracked the numbers daily. I recorded when they did a test and then the test results. Gathering all the information I could helped me understand the process and what was happening with Mark’s body. I recognized and celebrated every little miracle that happened.

Mark’s low red cell count was a cause for concern because it could indicate internal bleeding, bone marrow failure or kidney disease. Within this same week his red cell count increased from 3.3 to 3.8 million with the goal range of 4.0-4.5. I saw the numbers as a great improvement.

I also noted on one day I saw Mark move his finger, on another he held his head up slightly to cough and another time he yawn. I rejoiced in every movement and recorded them in my journal. Unfortunately, Mark wouldn’t do these things when the doctors, nurses or therapist were there so my joy had no merit by their standards.

Without meaning to, I annoyed the doctors and nurses with my records and positive notations. It became a daily routine when the doctor walked into Mark’s room with the hospital records and stated, “No change.” I would then read from my records and report what I had witnessed. The doctor then left the room as frustrated with me as I was with him. We definitely did not see Mark’s progress in the same way. He never specifically said, but it was written all over the doctors face, who was I? A young 32 year-old spouse, uneducated in neurology, who had the audacity to question and challenge his words. I was truly grateful for his knowledge and skills which saved my husband’s life, but I didn’t appreciate his bedside manners. My observations were not taken seriously. The doctor was the medical professional, reading and understanding what the results of many tests were telling him. However, I knew Mark and was the one spending many hours with him day in and day out. I felt his spirit and knew he felt mine. It was so frustrating that what I witnessed had no value with the professional caregivers. I wanted us to be on the same team, working together in Mark’s behalf, but instead it felt like we were on opposing teams. There were a few days I was tempted to throw my shoe at the doctor as he walked out the door. Equally frustrated at me, I’m sure he was tempted to stitch my lips together.

The day after my 32^nd birthday, they did a Brain stem Auditory Evoked Response (BAER) test which measures how the brain processes the sounds you hear. The BAER test records brainwaves in response to clicks or other audio tones that are played. The test can help to diagnose hearing loss and nervous system disorders in people who are not able to participate in a standard hearing test. While Mark was lying in bed, a technician placed small electrodes (sticky patches with wires attached) on Mark’s scalp and earlobes. The electrodes were connected to a machine which recorded his brain activity while he heard a series of clicks and tones played through earphones.

I was elated as I watched his brainwaves being recorded in black on the continuously fed white sheets of paper. He was reacting to the noise he heard, which confirmed my belief that he could hear and his brain was processing it. My spirit jumped for joy with each spike his brain activity made every time he heard one of the clicking sounds or other tones. The printout of the test results was something tangible which showed the spikes. I didn’t know what a normal or abnormal test looked like, but the report appeared wonderful to me. I was excited to hear what the doctor would say. I was positive it would be good news.

The next day the doctor told me that the test indicated significant damage to the brain stem, which is responsible for breathing, sleep patterns, hunger and thirst, blood pressure, heart rhythms, and body temperature. It regulates the central nervous system. “Mark has bruising and injury throughout all parts of his brain, but the most severe damage is to the brain stem. When you go to sleep, it’s the part that wakes you up. With the amount of damage he has, I don’t expect he can ever wake up.”

A chill ran up my spine while a flashback flooded my mind. After I gave birth to Katie, I hemorrhaged and had to have an emergency surgery. When I was coming out of my sedated state, I heard doctors talking about all the blood I had lost. I felt one of them pull down the bottom part of my eyelid as he commented on how white the area was, which should be pink in color. Inside I panicked, but could not make my body move. I worried they thought I was dead and I felt helpless to show or tell them otherwise.

With this doctor’s words, I felt Mark’s terror. He, too, was trapped in a body unable to respond. I followed the doctor as he left Mark’s room. “Please don’t ever give reports like that at his bedside again. I prefer we meet in the conference room to have these discussions. After all, the BAER test confirms he can hear, right?”

“Yes, he can hear, but I don’t believe he understands a word that’s said. However, if it makes you feel better, we can meet in the conference room from now on.”

Blessings From Grief

Sometimes it’s hard to see the blessings given to us when we are in pain. These three inspiring thoughts reminded me of some I received which helped me move forward through my sorrow.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Our experience with grief gives us the ability to truly empathize with another in similar circumstances. What blessings have you received or have been able to give another during sorrowful times?