A Remarkable Experience

I love this time of year and the message Easter brings. One of my favorite articles I’ve written was posted on Easter Sunday 2014, He Lives. I decided to repost parts of it today, because it’s a marvelous, comforting experience worth retelling.

The spring season is the transition from winter to summer. It’s a time of growth and renewal of life, when plants and trees which have been dormant for a season regain life and begin to bud into a lush, green, beautiful plant. The timing is perfect for the event of our Savior’s resurrection. Springtime is usually my favorite, however, in 1991 it was a lost season because Mark literally slept through it in a coma after our horrific car accident.

I was grateful Mark appeared to be in a safe and sheltered place, unaware of the hospital surroundings, while I struggled to hold myself together. Helpless to make Mark better, I sat next to his bedside in the Intensive Care Unit at MacKay Dee Hospital in Ogden, Utah. My right arm was in a sling and I wore a brace for my broken collarbone, but I hardly noticed the pain—it was nothing compared to my broken heart and worry. Mark, lying perfectly still and quiet, wasn’t bothered by the loud noises from the monitors or the shunt inserted at the top of his head, draining excessive fluid from his brain.

During the long three months Mark was comatose I wondered, where is he? I could see his body, but often his spirit felt absent. Peace radiated from him and I felt a glimpse of heaven in his presence. What will he be able to tell me when he’s conscious? I was certain it would be something special. I longed to hear his voice. There were some days when I felt his company for a short time and on a few better days our spirits were able to communicate through thoughts. I would talk to him and hear his reply in my mind or feel his comfort. It was an impressive, angelic form of communication and I cherished those moments, but I had no control over when or how it would happen.

Mark’s ability to regain consciousness was a slow and gradual process which took several more weeks. At first he would occasionally answer yes or no questions by blinking his eyes once for no and twice for yes. We tested him often with obvious questions. As he improved he would whisper a word or two. One day I showed Mark a picture of Christ and asked him if he’d seen Him. He quietly said, “Yes.” Months later when he could talk in sentences he told of his experience, which he has now written down.

“Just before waking from my coma, I thought I was walking the length of a long white hallway. Standing at the far end of the hall was another man about my same height. I say this because neither of us had to look noticeably up or down to look directly into the other’s eyes. He had a full head of pure white hair longer than shoulder length, and a pure white beard that was chest length. I presumed that man to be Jesus Christ. Thinking I had died and would be in His proximity for eternity, I walked up to within a few feet of Him and stopped. I asked for the location of Heavenly Father. He then pointed up and over His shoulder with His thumb toward the door behind Him and said, ‘In the next room.’ I reached around Him and opened the door. Before seeing anything in the next room, I awakened from my coma. I wish I’d known then how short that meeting would be; I would’ve liked to have spent more time with Him.”

As Mark related this experience to me, I knew it was true. During his months of unconsciousness, I knew he was in a special place feeling peace and contentment. I believe there’s more to his experience than he remembers and appreciate the comfort this memory brings to him. It brings comfort to me also; not only does it reassure me that Christ is real and knows each one of us, but I believe that the doors were Mark’s choice and the door he chose brought him back to me. He loves to relate this experience to whoever will listen. Remarkably, he tells it using the same words. Since his TBI, Mark has short term memory loss, meaning he can’t remember who he’s told or the words he used. Nevertheless, he uses nearly the same words each time. This confirms to me that Mark’s experience was real and he was given the memory of it and the words to share it, not only to bring comfort to himself, but to touch the lives of others.

By this experience and others, we know Christ lives! He is resurrected. We will return to His presence, where joy, peace and comfort will be found. We were blessed to survive the shocking car accident and we were blessed again by this marvelous experience. We share it along with a beautiful rendition of our favorite hymn in celebration of His resurrection. Happy Easter!

<p><a href=”http://vimeo.com/29685920″>I Know That My Redeemer Lives</a> from <a href=”http://vimeo.com/user8691070″>INTO THE LIGHT Journal</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

 

Understanding a Complicated System

Have you ever studied so hard your brain hurts or feels tired? How delicate is our brain? Why does a person with a traumatic brain injury drift in and out of consciousness? I’ve researched some sites on the brain and meshed information together from two of my favorite sources, which are listed at the end of my article.

Image credit: http://www.howyourbrainworks.net

Our brains weigh about 3.4 pounds of extremely delicate soft tissue, being the consistency of jelly or soft butter. So delicate it can’t even support its own weight. Fortunately, it’s well protected in the hard bones of our skulls, durable tissue and surrounded in a bath of cerebral spinal fluid. Because the brain is immersed in a liquid, its weight is reduced to a point at which it can support itself. The cerebral spinal fluid provides further protection to the brain by its presence within a series of hollow, interconnected chambers, called ventricles. Aside from contributing to the structural support of the brain, this bath of fluid also provides a water cushion that protects your brain in a collision or if you just bump your head.

The brain has no ability to maintain long term energy reserves; it must be constantly supplied with blood. This occurs through the vertebral arteries and the internal carotid arteries. Within the brain itself, these arteries are interconnected, allowing for a continuous supply of blood to all portions of the brain when one or more arteries become blocked.

Brain scans show that thinking uses up a lot of energy, which is revealed by increased blood flow. It uses as much as a fifth of all the energy we get from food. Since our brains can’t store much energy and because they’re tightly enclosed inside our skulls, there is a limit to how much blood and therefore energy can be supplied to the active areas. Consequently, thinking hard tires your brain.

Image credit: File:Neuron.svg

Specialized cells called neurons perform the information processing that occurs within the brain. This processing occurs as a result of the transmitting and receiving of electrochemical signals by these cells.

Many of our brain’s nerve fibers are wrapped in a fatty sheath, which makes 10% of our brain fat. This fatty sheath, called myelin, is vital as it insulates the nerves. This allows electrical impulses to travel quickly around your brain.

Image credit: Imgarcade.com

If you hit your head hard and the skull is broken, the pieces of the broken bone may dig into the brain and tear the delicate tissue. Even if your skull isn’t broken, it’s possible to sustain serious brain damage if the brain impacts onto the inside of the skull or twists against its rough surface. When there is sudden speeding up and slowing down, such as in a car crash or fall, the brain can move around violently inside the skull, resulting in injury causing bruising or bleeding. Bleeding is particularly dangerous, causing further damage. A person with this type of injury may seem fine initially as the effects take several hours to reveal themselves.

The severity of injury refers to the degree or extent of brain tissue damage. The degree of damage is estimated by measuring the duration of unconsciousness, the depth of coma and level of amnesia or memory loss. MRIs or CT scans are also used to project the injury.

Image credit: http://www.chicagointernalcleansing.com

Research shows that just like with muscles the more you use a part of your brain, the larger it will get. Also like muscles, as you use a particular part of your brain, more blood is pumped to that area to provide energy. Finally, as with muscles, the more you use your brain, the better it works, subsequently it can improve.

The human brain is a complicated system comprised of over 1 billion specialized cells called neurons. These neurons get damaged in a collision and take time to heal. Amongst these neurons there are countless connections. “To comprehend this fully, one needs not look further than the Amazon rainforest, where there are some 1 billion trees. If one counted every leaf on every tree, the sum would closely parallel the number of connections in the human brain.”-unknown author.

Your brain is constantly monitoring and fine tuning what is going on in your body – 24 hours a day, year after year – without you even being aware of it. What do you do to ensure its health and safety?

Resources:

http://www.brocku.ca/stutter/frpgs/brain.html

http://www.youramazingbrain.org.uk/insidebrain/yourbrain.htm

 

 

Looking for Inspiration

Mark’s pneumonia seemed to be improving, but the fever persisted and the white cell count was too high. Dr. Wright felt changing his feeding tube would improve his condition.

image credit: http://www.baxternutritionacademy.com

“The nasogastric (NG) tube is not meant for long term and can be a source of infection. Since we don’t know how long it will take for Mark to be capable of chewing and swallowing, I recommend it be replaced with a gastrostomy tube which allows feeding directly into the stomach,” Dr. Wright said.

“It would be his third surgery in nearly three months. I would hate for him to go through it, especially when he’s showing signs of improvement.”

“The percutaneous endoscopic gastrostomy (PEG) procedure is relatively common under these circumstances. It’s a simple surgery, which only takes 30-45 minutes,” the doctor said.

I despised making decisions for Mark. The responsibility was a heavy load that I was unprepared to carry. What would he want? I tried to connect with his spirit. Tell me Mark, what do you want me to say? Do you need the feeding tube? Should I agree to it? I knew I had to be his voice, but I wanted him to give me the answers. I felt and heard nothing.

“I believe the PEG will improve Mark’s condition and lower the frequency of aspiration. He’ll tolerate it better,” the doctor encouraged.

“Okay,” I agreed reluctantly.

image credit: http://www.nlm.nih.gov

Within a few days, Dr. Wright arranged for the surgery at a nearby hospital and ordered a specialized van which could transport Mark in a reclined wheelchair. I rode in the van with Mark. He was unconscious and seemingly unaware of the drive on this beautiful, hot summer day in July. When we arrived at Cottonwood Hospital, two male aides lifted Mark’s stiff body onto a stretcher and wheeled him into an operating waiting room. I meet the surgeon for the first time just minutes before the surgery was scheduled. With a nurse at his side, the doctor explained to me the procedure details. The nurse handed me a thin, wooden clipboard with forms for me to sign, not only giving approval for the surgery, but declaring my understanding of the risks involved. The complications listed included: aspiration, oversedation, wound infection and/or bleeding. These complications I could comprehend, but an injury to the liver, bowel or spleen took me by surprise. When I read hemorrhaging and perforation, or unwanted hole in the bowel wall, which could be fatal, a big red flag shot up in my mind.

Risks—wait a minute. I was only told about how common and simple this procedure was. Now I’m reading about all the unfortunate possibilities and just minutes before the surgery was scheduled. I felt trapped and wasn’t convinced Mark needed the PEG in the first place. I believed with every fiber of my being that life would get back on the normal track—the one we were familiar with.  I couldn’t imagine any other way of life, but these foreign road blocks kept getting in our way.

I looked at Mark, who was unaware of my turmoil. I resented being in this position. I was hoping and praying for inspiration to know what his desires were, but I felt nothing.

“I can’t sign these forms,” I said to the surgeon, handing back the clipboard and forms to the nurse. “I wasn’t made aware of these complications.”

“Oh, the chances of any of them happening are one in a thousand,” he said in a reassuring voice.

“Before our car accident, I could think Mark would never be that ‘one in a thousand’. The statistics mean nothing to me now. How many car accidents happen and result in a traumatic brain injury, causing a coma for three months? If you happen to be that ‘one in a thousand’, that’s all that counts.”

“He’s had the NG tube twice as long as recommended. They are not meant to be used more than six weeks. Dr. Wright has recommended this procedure in order to maintain adequate nutrition for Mark.”

“I understand, but I just don’t know how much longer he will need any feeding tube and I wasn’t told about the risks until now. I need a few minutes to process this information. I don’t want to sign the consent forms under pressure. I need to think about it, I’ll be back soon,” I said as I walked out of the room, leaving the nurse and surgeon with Mark.

I hurried down the hall wanting to vanish from this situation, but not knowing where to go. I can’t believe I just walked out. I don’t want to make one more decision about Mark’s healthcare, but I’m expected to. I wasn’t getting an answer from Mark on what I should do, so I knew my best option was to find a secluded place to pray. I spotted a women’s bathroom, went inside and locked the stall door. Lord, I’m under pressure to sign for this procedure. I believe you know all from the beginning to the end. Please tell me—should I sign for Mark to have the surgery? Does he really need it?

Feeling awkward and anxious about this strange place for such an important prayer and my desperate need for inspiration, I was quickly overcome with a calming sensation. Yes, he needs the surgery. Fear not, everything will be alright., I am with thee.

Thank you for your insight and reassurance.

I walked back to the room with confidence in my decision and the surgeon and nurse were relieved when I told them I was ready to sign the forms. The nurse handed me the clipboard and after my signatures, they rushed off to the operating room.

Ninety minutes later the surgeon finally came to the waiting room where I was told to wait. “The surgery was a success. The reason it took longer than usual was because of Mark’s strong stomach muscles.”

“He’ll be proud to hear that,” I said with a smile. “Mark did a hundred sit-ups nightly to stay fit and trim. He never wanted a pot belly.”

“Well, he definitely doesn’t have one. It’s more like abs of steel,” the doctor said as he shook my hand good-bye.

Mark and I spent a few more hours at Cottonwood Hospital in a recovery room and by early evening the van came and drove us back to Western Rehab. The dreaded G-tube was in place and all went well. Mark survived his third operation and I looked forward to telling him that the surgeon confirmed his abs were made of steel.

 

Understanding Traumatic Brain Injury, Part 2

image credit http://www.livescience.com/

While Mark was at McKay Dee Hospital, I was introduced to the Glasgow Coma Scale (GCS), which is used to measure the depth of a coma. When Mark moved to Western Rehab they used the Rancho Los Amigos Scale, also known as the Level of Cognitive Functioning Scale (LCFS). The treatment team used this scale as a guide for his therapy plan. Their strategy changed as Mark progressed from one level to the next. They believed Mark would have to go through each level, without skipping one to progress. Consequently, the team was always encouraging and working to get Mark to the next level. I don’t believe Mark ever went through the dreaded Level IV. I did see other patients go through this level and it was upsetting, not only for the patient and family, but for all who witnessed the confusion and agitation.

Each person with a brain injury moves through the cognitive levels at various speeds. Some patients will be discharged from the hospital prior to progressing through all ten levels. I brought Mark home at cognitive level VI.

Level I – No Response: Patient needs total assistance and appears to be in a deep sleep or coma and does not respond to any external stimuli.

Level II – Generalized Response: Patient needs total assistance, but moves around. Movement doesn’t seem to have a purpose or consistency. This reaction may be due to deep pain. Patient may open their eyes, but does not seem to be focused on anything in particular.

Level III – Localized Response: Patient needs total assistance, but begins to move their eyes and look at specific people and objects. They turn toward or away from loud voices or noise. The patient may follow a simple command such as, “squeeze my hand.”  Responses are inconsistent and directly related to the type of stimulus.

Level IV – Confused and Agitated: Patient needs maximal assistance. They are very confused and agitated about where he or she is and what is happening in the surroundings. At the slightest provocation, the patient may become very restless, aggressive or abusive, verbally and/or physically. The patient may enter in incoherent conversation in reaction to inner confusion, fear or disorientation. Safety and deficit awareness are important issues.

Level V – Confused, Inappropriate, Nonagitated: Patient needs maximal assistance. They are confused and do not make sense in conversations. They may be able to follow simple directions. Stressful situations may provoke some upset, but agitation is no longer a major problem. Patients may experience some frustration as elements of memory return. Follows tasks for 2-3 minutes, but is easily distracted by environment.

Level VI – Confused, Appropriate: Patient needs moderate assistance. Speech makes sense and they are able to do simple things such as dressing, eating and brushing teeth. Although patients know how to perform a specific activity, they need help discerning when to start and stop. Learning new things may also be difficult. The patient’s memory and attention are increasing and they are able to attend to a task for 30 minutes.

Level VII – Automatic, Appropriate: Patient needs minimal assistance and can perform self-care activities and is usually coherent. Behavior is appropriately in familiar settings and shows carry-over for new learning at a lower than normal rate. They may have difficulty remembering recent events and discussions. If physically able, patient can carry out routine activities, but has difficulty with rational judgments, calculations and solving multi-step problems. Patient may not realize this and needs supervision for safety.  Patient initiates social interactions, but judgment remains impaired.

Level VIII – Purposeful, Appropriate: Patient needs stand-by assistance, but is independent for familiar tasks in a distracting environment for a short period of time. He or she acknowledges impairments, but has difficulty self-monitoring. Emotional issues such as depression, irritability and low frustration tolerance may be observed.

Level IX – Purposeful, Appropriate: Patient needs stand-by assistance on request, but is able to shift between tasks for two hours. They require some assistance to adjust to life demands. Emotional and behavioral issues may be of concern.

Level X – Purposeful, Appropriate: Patient is modified independent and is goal directed, handling multiple tasks and independently using assistive strategies. Prone to breaks in attention and may require additional time to complete tasks.

Resources: http://www.tbims.org/combi/lcfs/lcfs.pdf , https://www.jhsmh.org/LinkClick.aspx?fileticket=8hAd-OqTIQ0%3D&tabid=298

I hope this information is helpful in understanding the recovery process from traumatic brain injury. Did you or your loved one go through each level? At what level were they released from the hospital?

Understanding Traumatic Brain Injury, Part 1

Shortly after the car accident, the hospital informed me of an ongoing weekly class they held in the evening to help family members understand Traumatic Brain Injury (TBI). It was informative, helpful and overwhelming. I attended the classes every week only because it was information I needed, but it was definitely not wanted information. To be honest, I hated the class. It was frightening and discouraging. I wanted Mark’s recovery to be like the ones portrayed in the movies, where a person in a coma just one day wakes. I didn’t realize there was a measurement to the depth of a coma and there would be a process for waking up. After all, we do it every morning with little thought. It was difficult to throw out the mentality that you’re either comatose or not and realize there are levels or stages.

Image credit: http://www.hetterimages.com

At first I was introduced to the Glasgow Coma Scale (GCS), which is used to measure the depth of a coma. “The GCS rates three aspects of functioning: eye opening, motor response and verbal response. Individuals in deep coma score very low on all these aspects of functioning, while those less severely injured or recovering from coma score higher. A GCS score of 3 indicates the deepest level of coma, describing a person who is totally unresponsive. A score of 9 or more indicates that the person is no longer in coma, but is not fully alert. The highest score (15) refers to a person who is fully conscious.” http://www.msktc.org/tbi/factsheets/Understanding-TBI/What-Happens-During-Injury-And-In-Early-Stages-Of-Recovery

I. Eye Opening

1 = No eye opening

2 = Eyes open to pain

3 = Eyes open to speech

4 = Spontaneous eye opening

II. Verbal Response

1 = No sounds
2 = Incomprehensible sounds
3 = Inappropriate words and jumbled phrases consisting of words
4 = Confused, yet coherent, speech
5 = Alert and oriented

III. Motor Response

1 = No response
2 = Extensor response, abnormal body posture that involves the arms and legs being held straight out, the toes being pointed downward, and the head and neck being arched backwards. The muscles are tightened and held rigidly. This type of posturing usually means there has been severe damage to the brain.
3 = Abnormal flexion, posturing in which a person is stiff with bent arms, clenched fists, and legs held out straight. The arms are bent in toward the body and the wrists and fingers are bent and held on the chest.

4 = Withdraws from unpleasant or painful stimuli
5 = Localizes to unpleasant or painful stimuli
6 = Obeys commands fully

The final score is determined by adding the values of I+II+III. This number helps medical practitioners categorize the four possible levels for survival, a lower number indicating a more severe injury and a poorer prognosis.

Mark’s highest score for the first seven weeks was 4: Eye Opening 2 + Verbal Response 1+ Motor Response 1 = 4.

Mild TBI Symptoms – score 13-15

Moderate Disability score 9-12:

• Loss of consciousness greater than 30 minutes
• Physical or cognitive impairments which may or may not resolve
• Benefit from rehabilitation

Severe Disability score 3-8:

• Coma: unconscious state. No meaningful response, no voluntary activities

 Vegetative State score less than 3:

• Sleep wake cycles
• Arousal, but no interaction with environment
• No localized response to pain

 Persistent Vegetative State:

• Vegetative state lasting longer than one month

 Brain Death:

• No brain function
• Specific criteria needed for making this diagnosis

Resource: http://www.traumaticbraininjury.com/symptoms-of-tbi/glasgow-coma-scale/

When he moved to Western Rehab, they used a Rancho Los Amigos Scale or Level of Cognitive Functioning Scale (LCFS) which I’ll save for part 2.

Did you find this information helpful? What has been your experience or understanding of TBI?

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!

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.

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.

 

I Believe in Miracles

It was a grueling decision to stop the sale of our home in Sandy, UT. We were excited for about our new beginnings with an updated home and a better job. I wavered back and forth on which was the right choice. How I missed discussing this with Mark. With every fiber of my being I wanted our life to go on as we’d planned. The home we were most interested in was located in Uintah, just south east of Ogden. Weeks had gone by with no improvement and the hospital staff was not giving any hope there would be any. The realtor that sold our home was encouraging me to go through with the sale and not lose the deposit. Her advice was that we’d need the money now more than ever.

The hospital social worker assigned to us counseled me to stay put. He suggested the kids and I would need the support of our nearby friends. We had lived in our home for ten years and had established great relationships with many of our neighbors. His suggestion made sense to me, but backing out of an agreement seemed not only wrong, but felt like a giant step backwards. I wanted to move forward and not give up on our plan.

How would Mark feel when he wakes up? Would he be upset that I didn’t follow through with the sale? Would he feel like I gave up on him? I wanted to make the right choice…a choice that would be best for Mark, the kids and I. Believing that Mark would wake up any day, I wanted to put off the decision, but realized it wasn’t fair to keep the buyer wondering if the sale was going to go through or not.

One night I had a dream that I went through with the sale of our home. Because Mark was unable to work, we could not qualify for a new mortgage. The kids and I had the stress of moving into an apartment while Mark was still in the hospital. After months of rehabilitation, he came home in a wheelchair which was nearly impossible to maneuver in the apartment. It was hard for the kids and me to make new friends with all the other adjustments we were going through. Mark didn’t know anyone. He felt lost in unfamiliar surroundings and people.

The dream was the first insight I had on what our life could be like…but it was just a dream. I didn’t want to believe it, or even think it. I wanted Mark to be completely healed and for life to continue as we knew it.

The advice of the social worker seemed perfectly logical after the dream. I called the realtor to let her know we needed to back out of the sale of our home. It was the first tough decision I had to make without Mark’s input. I was sad, but relieved at the same time. I didn’t need one more thing to worry about and as much as I wanted to move, I knew the timing wasn’t right.

Over time it became obvious to me that to the doctors, nurses and therapist saw Mark as a body they were in charge of keeping alive. However, to me he was a person, a son, a brother, a friend, a father and most important to me…my husband. While I appreciated the professional healthcare team’s knowledge and skill, I was offended by their bedside manner, especially the neurologist. I had never felt such strong conflicting emotions before. How could I be so grateful yet resentful at the same time about the same person? As the weeks went by, my resentment grew. I knew Mark needed their skills, but they gave no hope for improvement. I was scared and didn’t understand the things they knew through their education and experience. I was discouraged and constantly worried about Mark’s condition. How long must we endure existing on the edge between life and death? Five weeks already seemed like forever.

When I was at the hospital I worried about the children. Were they okay with the neighbors until I got home? School was going to be out soon, then what? Will I need to impose on family and friends all day? I felt like a neglectful mother for not being with my children.

At night when I was home with the kids I worried about Mark. What if he took a turn for the worse? Would I be able to get to the hospital on time? I was grateful for brothers and my dad who took turns being with Mark at night, but how long could I expect them to do this? My mother was driving me every day to and from the hospital, not only because our car was now totaled, but I also had a broken collarbone and my right arm was in a sling. The 60 mile drive twice a day was draining me, what was it doing to my mother? I hated to be dependent on others.

The only thing I knew for sure was that I needed to have Mark closer to home, but how could I make that happen? He was comatose because he had a traumatic brain injury. His right lung had collapsed and his red cell count was too low. His body wasn’t getting the oxygen it needed.

One night I got a call from the doctor. “Mark’s white cell count is dangerously high, which indicates infection, stress and inflammation. We think he may have a serious liver infection and we need your permission to do a liver biopsy.”

I gave my permission and hung up the phone, feeling helpless.

I knelt by my bed and cried out, “I’d been praying for Mark’s red cell count to increase and his white cells did. Why aren’t my prayers being answered? When will this nightmare end? I’m scared he can not get better. I’m worried I don’t have the strength to endure life this way. I am exhausted! What am I suppose to do?”

In my despair, a  question came to my mind. Do you believe in miracles? Yes, I believe in miracles! Then assurance came —If you believe, you will see miracles wrought before your eyes. Remember, some miracles take time.