Our Happy Place

Two months ago today Mark had his second total hip replacement surgery. Out of the three most common replacement surgeries, hip, knee and shoulder, we’ve been told the hip replacement is the easiest to recover from. We saw many people during his seven weeks of in-patient rehab days who healed a lot quicker than Mark, even with a knee or shoulder surgery. It’s hard not to get discouraged. This is when I realize having a short-term memory problem is a blessing that Mark inherited from his traumatic brain injury (TBI). He lives in the moment, which is what I’m trying to learn how to do.

The pain of moving joints, muscles and tendons which have been cut and were not in good condition beforehand seemed at times unbearable. Mark’s ability to make his body move is difficult with his TBI under normal conditions, but throw a surgery in the mix and it’s nearly impossible. However, he persistently works hard to please the therapists and me, doing all that is asked of him, even when he doesn’t feel like it. He has made remarkable progress for his circumstances. When I liken his abilities to before surgery and not another patient, I am thrilled with his progress.

Often right before or during a painful stretch, Mark’s therapist would say, “Go to your happy place.” To that Mark would reply, “My happy place is any place other than here.”

Wanting to be helpful, I started naming vacation spots which hold wonderful memories. “How about the beauty of Zions, Bryce and Grand Canyon; remember the thrill of seeing the parks for the first time on our honeymoon?”

“I just want to go home.” Mark replied.

My thoughts moved to the gorgeous State of Washington where Mark grew up. “I love Deception Pass and the San Juan Islands. I look forward to our next trip there, how about you?”

“Home is my happy place so take me home.” Mark pleaded as the painful stretch continued.

As a wife and caregiver, I want nothing more than for Mark to be better. My world has revolved in this endeavor for twenty-five years next month. In the first few years after his TBI, it was a race against time because it was believed that the greatest amount of progress would happen in the first year and then slow down and plateau within the following couple of years.

Subsequent years we continued seeking for improvement with foot surgeries on both feet to correct foot drop and toe tendons cut to release curl to make standing possible. Also he’s had previous hip surgeries to clean out the joints for improved movement and a Vagal Nerve Stimulator (VNS) implant to help control his seizures along with the various surgeries in the beginning which saved his life. All told, Mark has had fifteen surgeries since the car accident.

Mark turned sixty last November so the path of our journey seems shorter than it used to, which adds a new dimension for recovery importance. It’s evident to me that striving for improvement is a lifetime pursuit. But this is not the life we’d planned and there is a certain amount of grieving that happens over the loss of dreams and honestly some dreams are harder to bury than others.

I’m human and some days I run out of patience and energy. I want Mark to be better now, but recovery is still happening. We are no longer in an in-patient facility, but are now engaged in out-patient therapy. I’m finding it hard to get into a regular routine with the interruptions of driving to and from the needed therapy sessions daily, preparing meals, managing prescriptions and doing the regular household chores. These are the responsibilities I was relieved from while Mark was at the rehab center. Don’t get me wrong, I’m happy to be home, but I’m looking forward to these common tasks becoming second nature to me again. Feeling overwhelmed makes me wish for a far-away trip, a vacation from health concerns and worries. However, the TBI and physical limitations go with us no matter where we are—so there’s really no escape.

Backyard – My happy place.

At the same time, I’m grateful to be home where we have our privacy and some control over our own time. I appreciate the beautiful place where we live, which was custom built to meet Mark’s needs. For us it is the most comfortable and peaceful place on earth, designed to make our life easier. The openness and wide hallways make it possible for Mark to maneuver in a wheelchair. The large shower which Mark can roll right into and a bathroom sink he can roll under creates independence. Even outside we have cement sidewalks around the backyard so we can enjoy the outdoors together. We are fortunate to live in such a house and we have awesome neighbors too. Whenever I feel sad about the places we can’t go, I remember, there is truly “no place like home.” We are grateful after nearly eight weeks of being away to finally be back in our “happy place.” We couldn’t be more thrilled that the surgeries are finally behind us and given a year to heal, I’m certain Mark will be entirely pleased with his hip replacements.

Where is your happy place?

The Wonders of Recovery

Mark’s left hip replacement went well last Tuesday, January 26^th, despite the delay. It didn’t even get started until 5:30 PM due to difficulties with a prior surgery. Around 9:30 PM he was moved into a hospital room groggy, but awake. It made for a very long day and night. His appetite and strength have been very good. The main concern has been the dark, huge bruise from under his armpit to his waistline, not where we expected to see bruising after hip surgery, which makes me wonder what went on in that surgical room.

Wednesday, Mark had a radiation treatment to slow the bone growth in his hips, which is the cause of his joint problems. Thursday, he was released from the hospital to Rocky Mountain Care.

If you’ve experienced rehabilitation, you’re probably familiar with uncertainties like: How long will it take to recover? When will we realize the advantage of surgery? How much pain will have to be endured? These and possibly many more questions, along with the enormous desire to feel better right now are part of the recovering process.

Before Mark was discharged from the hospital with the right hip surgery last July, I visited six rehab centers in our area which were listed with the insurance company. I can’t imagine spending such an important and limited time in a facility without doing research first. With the doctors recommendation, we’d wanted Mark could go to HealthSouth for rehabilitation. They specialize in neurological problems and since Mark has a traumatic brain injury (TBI), I knew they had equipment which Mark would need for rehab. However, the insurance wouldn’t allow it because this rehab was based on a hip surgery and not TBI. Disappointed, yet determined to get Mark the best possible help with therapy, our second choice was Rocky Mountain Care. I was impressed with their homelike atmosphere, clean smell and they had more equipment than the other gyms I visited on the insurance approved list.

Mark’s TBI and physical limitations give him special needs. At home we have a standing frame and a roll-in shower along with a shower/commode chair which he uses daily. The rehab centers on our insurance list didn’t have either and since they’re important for his recovery, therapy plan and general health, I’m willing to bring them from home along with his custom walker. The challenge is finding a room which has space for it all, plus an extended bed for his height and a trapeze, which helps him change position while he’s in bed. Along with these essentials he needs the capability to maneuver his wheelchair in and out of the room. Wow, this list sounds pretty lengthy and must be why we don’t travel anymore.

Suite kitchen and my office area. Door in between goes to bedroom.

Suite living room

Fortunately, Rocky Mountain Care has a couple of rooms which can accommodate Mark’s needs and they’re willing to let us arrange the room to do so. In August and September of 2015, we were lucky enough to get a suite. It was beautifully furnished and definitely the nicest room in the building. The kitchen had a full-size fridge , small microwave and a solid wood dining table with six cushion chairs.

Suite living room with therapy balloons and balls.

Suite bathroom

The living room was furnished with a couch, two comfortable stuffed chairs separated by a table and lamp and a television on top of a beautiful wood stand. A large wood desk was in the back of this room by a glass sliding door which led out to a small patio. The view of the mountains from the living room and patio was spectacular.

The separate bedroom had two twin sized beds, a large dresser, a chest of drawers and a roomy closet. The bathroom had ceramic tiles with a roll-in shower and was perfect for the shower/commode chair or wheelchair. This is unlike any other room Mark’s ever had in a rehab center. We felt spoiled and a little guilty for having it.

Therapists, Brandi and Trish

The room was wonderful, but the biggest advantage to Rocky Mountain was the therapists. They were knowledgeable, caring and worked hard to improved Mark’s abilities. For this reason, they were our first choice this time around. It was nice to have the decision made before surgery and it actually decreased a day in the hospital because we made the arrangements beforehand.

Since Mark has a severe short-term memory problem, he is dependent on me to keep him oriented. Unfamiliar surroundings and routine make him feel unsettled and his memory is worse. He forgets what he’s supposed to be doing and where he is, which can make him agitated or anxious. Since I want him to get the full advantage and have the best experience with rehab, I prefer to stay with him. The suite made it easier, but because it’s a lot more costly than a regular room, we are not in the suite for this round of rehab. It’s been an adjustment and the difference is like being on a cruise verses camping complete with an air-mattress for me. It’s hard for me to go home because I worry he might have a seizure and the nursing or aide staff will not know. I wonder if he’ll be able to find or remember how to use the call button when he needs help and the waiting time for that help also concerns me.

Mark’s bed on the west wall.

Entrance to room

I like to be involved in Mark’s care—not to interfere, but rather assist while he is here. However, it’s awkward to step back since I’ve been taking care of him for so many years. I have to continually remind myself  that what seems so obvious or natural to me isn’t for the professional caregiver who has several patients at one time with all different levels of abilities. I’m realizing every rehab experience is different even with the same patient, therapists and caregiver staff.  But the goal is always the same—to get home stronger and better. We’re confident it will happen with the therapy and supported care we have here.

Mark’s standing frame and my work station. West and south wall.

East wall with my air-mattress standing up, which I lay down for sleeping.

 

 

 

 

 

 

 

We are grateful for all the well wishes and prayers. We feel blessed and amazed at Mark’s ability to heal and adapt to foreign implant objects. This along with all the love and care of others is the most wonderful part of recovery.

The Countdown

 

Rocky Mountain Care Carnival September 2015

Facing another total hip replacement makes me so anxious and worried you’d think I was the one going through the surgery. I’m confident it would be easier for me than Mark to recover, so if I could I’d trade him places, but sadly it’s not possible. Fortunately for Mark, he remembers very little about the first operation and rehab. A poor short-term memory is the result of his traumatic brain injury and is a benefit in this case. It appears the surgery is not a big deal to him and maybe that’s a blessing for me also. I only need to deal with my own anxiety and not Mark’s too. However, I just may worry enough for both of us.

This journey began a year ago and to begin with we said, “no way,” but as the pain and stiffness grew and dressing and transferring Mark became harder, we started to consider the idea. I feared my ability to care for Mark was coming too quickly to an end with already needing a large hernia repaired. We discussed: Where do we go from here? Could we live happily apart? Who could take good of care of him and would I be satisfied with them?

Mark wasn’t a perfect candidate for total hip replacements, so he had several tests preformed to determine whether it was even a possibility. Every test revealed a new problem such as severe degenerative disc disease, osteoporosis and scoliosis of the spine and osteopenia (a precursor to osteoporosis) of the hips. These health issues are related to nearly twenty-five years in a wheelchair with limited mobility. Since his hips no longer had the ability to bend at 90 degrees, he spent hours in a poor sitting position, which resulted in terrible neck and back pain. Our bodies are meant to move and if we can’t or don’t, it causes additional problems. The hip replacements became our hope for relief from pain and improved movement in his hips to help with dressing and transferring. However, the test results were discouraging and overwhelming. The bone density test revealed he was a high risk for a break, which is frightful. What should we do and when do we give up? These two questions took months to answer.

The orthopedic surgeon gave Mark only a 50% chance of the surgery improving his condition. Mark replied, “I’ve beaten lesser odds,” as he consented to go through with the total hip replacements despite the risks. The surgeon then warned, “Recovery will be hard due to your state of mobility.”

“Well I’m not afraid of hard,” Mark said as I thought, he’s rather accustomed to it. He lives with hard every day, which makes Mark stronger than he appears.

In May I had my hernia repaired and two months later Mark had his right hip replaced. August and September he stayed in a rehab center and has had outpatient therapy twice a week for the past four months. Oh, what a year it’s been and we now understand a new level of hard. Not that we regret the surgery, but we didn’t realize just how long and hard the recovery would be.

Mark’s continuing optimism and determination for improvement is inspiring and one of the reasons why I love and support him so much. We knew with the first surgery he wouldn’t get full benefit of it until he had the second one. I’ve dreaded this second surgery day and wished I could take him far away to a place unknown to earth where there are no limitations and only comfort is felt. If we could fly we’d surely escape, but instead we are here with the surgery date just around the corner. With family, friends, a skilled surgeon and therapists, we are confident he will come out on the winning end and hope it will be sooner rather than later.

Rocky Mountain Care Carnival September 2015

I’m looking forward to Wednesday, post-surgery day. A week from now we should be in a rehab center healing and working on learning how to make that new hip work. As a wife, caregiver and advocate, I’ll be there every step of the way. Not because I have to, but because I want to be by his side. I know from experience he does better, just as we all benefit in any endeavor with support and encouragement from loved ones.

So if you’re reading this, you must care and we appreciate you for that. We are grateful for every supporter and welcome every prayer for a speedy recovery. We are better prepared and understand what to expect this time around, so it should be much easier. Besides, now he has one good hip to recover on.

There’s No Place Like Home

Image credit: http://www.sundanceresort.com/summer/

Nestled in the gorgeous Wasatch Mountain range is the beautiful Sundance resort. For the past several years my brother Steve has pampered us along with our parents and other siblings to a delicious dinner and outdoor theater tickets. Just a few days before Mark’s surgery in July, we found peace and entertainment surrounded by the huge pine trees as we enjoyed the Wizard of Oz. The storyline and music were perfect timing for the turmoil ahead. A few tears streamed down my face as Dorothy sang, Somewhere Over the Rainbow. The promise of blue skies, dreams coming true and troubles melting like lemon drops gave me hope for a brighter future. I’ve reflected on the story often through Mark’s recovery.

Image credit: http://www.sundanceresort.com/summer/

In the classic story written 77 years ago, of Dorothy and her dog, Toto, being caught in a tornado’s path which took them to the magical Land of Oz where life is strange, but beautiful. Wishing to return home, she is helped by the Good Witch of the North, but in trouble with the Wicked Witch of the West. She follows the yellow brick road to Emerald City where the great wizard lives in hopes he can take her back to a familiar way of life with the people she loves. In her travels she meets a scarecrow who wants a brain, a tin man who yearns for a heart and a cowardly lion who desperately needs courage. They all hope the Wizard of Oz will help them before the Wicked Witch of the West catches up with them. There are many twists and turns in their journey to meet the wizard who everyone says can help Dorothy return home and grant her new friends their wishes for a brain, heart and courage.

It’s common to hear in the halls of a rehab center, “I want to go home.” I’m quite sure it is the sentiment of most patients and the motivation for everyone who works hard in therapy. Some landed in rehab after surgery, while other storms such as a stroke, illness or loss of limb brought them there. All have left the comfort of their home in an effort to improve or save their health. The physical condition cyclone has taken each of them to a life that’s strange and unfamiliar. It’s made beautiful by a caring environment and other patients who understand the pain and share the goal of recovery. Wishing to return home, each is helped by good doctors, nurses, aides and therapists. The patients follow their advice like Dorothy followed the yellow brick road in hopes to get the help they need to return home. In real life there’s no Wizard of Oz who can magically get you home with all your goals achieved. Instead it takes persistent and painful work. Just as the scarecrow, tin man and lion found out, most patients learn from the journey they have within them what it takes to obtain their desire.

Dorothy was right, there’s no place like home and on Friday we were finally able to return. There is nothing more restful than sleeping in my own bed. However, I appreciate wonderful places like Rocky Mountain Care when we’re not capable or safe to be home. I’m filled with gratitude for therapists who work a bit of magic with their knowledge, and a caring staff that is all heart. I value the friendships we made there and am motivated by their life stories and courage. The environment there is very different from home, but it’s made beautiful as people improve and friendships form.

It’s hard to say goodbye to people we may never see again, who have inspired us in our lowest hours and have been with us daily in the pain and success of recovery. We return home changed by our experience and blessed by many people’s influence.

I am grateful to Steve for a wonderful annual summer tradition and for this years play which reminded me that Somewhere Over the Rainbow, skies truly are blue.

Hidden Blessings

Everyone can benefit from the encouragement of a promoter and believer in their abilities. I’m grateful for the activists in my life and therefore try to reciprocate by being supportive of others, especially Mark. Being his advocate is a responsibility I take seriously. I’ve witnessed the difference it makes not only in ours life, but in other’s lives as well. It boosts one’s drive to improve and changes their therapy and even the care they receive. Likewise, therapists and professional caregivers buoy up when they know there is a supporter on board. Being an advocate can feel heavy at times and weighs me down, but I see the blessing of improvement which comes from it.

Surgery or illness always brings more caregiving involvement due to the strength loss it brings and for Mark, another issue is his speech. Many people don’t take the time to understand him or they feel awkward when there is miscommunication. Some people are embarrassed to say they couldn’t grasp what he was saying. Mark realizes his speech is impaired and he is not upset by having to repeat himself. He’d rather do that than to be ignored or have someone not comprehend what he’s saying. With uncomfortable and pleading eyes others often look to me to interpret what he just said. Therefore, I feel the need to always be by his side to love, protect and encourage others to understand him. I see the blessing the blessing that comes from communication and when others get to know Mark’s fun personality.

I get lots of advice about what I should or should not do and I have to remind myself it’s generally coming because that person cares about our well-being. Some people think the level of dependency is unhealthy and wrong, while others praise the assistance. Ultimately, I’m just doing what I feel is best, which isn’t necessarily what I prefer to do. As most caregivers know, it isn’t about me. One of the blessings in all this is as I help Mark, my love for him grows and when I come to his aid with the right attitude, it becomes an honor to do so. Not all people can be caregivers, but I’m fortunate to have the health, strength and support which enables me to do so.

This year has brought some unusual difficulties in my caregiving journey. Starting with my large hernia, which was an easy fix with the obstacle being the six-week recovery time and finding someone dependable to care for Mark. Originally, I was in hopes to have my surgery right after Mark had his hip surgery. I thought it made perfect sense for me to recuperate while Mark was in the rehab center. Due to complications, Mark’s hip surgery was postponed and my recovery plan was ruined. Thank heaven for family and friends, especially a daughter who was willing and capable of moving in for the recovery time. It turned out to be a great blessing for all of us, bringing us closer together as we worked through those weeks.

After my recovery, Mark was approved and scheduled to have his surgery. Less than a week before the long-awaited date we were informed he would have to go a larger facility with an ICU due to the risk of complications. It became more frustrating when we were told the surgery date was now uncertain because they weren’t sure when they could fit the four-hour surgery on the bigger hospital’s schedule. Another hurdle was the surgeon wouldn’t start the surgery late in the afternoon. We anxiously waited until the day before surgery to get word whether Mark could be fit in or not. Fortunately the surgery was able to take place on the original scheduled date and having it done at the larger hospital proved to be a blessing. Mark needed one radiation treatment to hinder the excessive bone growth from recurring. This hospital has an oncology center so Mark didn’t have to go far the day after his surgery for the treatment.

I was disappointed when I learned Mark’s insurance plan wouldn’t allow him to go to the rehab center of our choice. I appealed to the insurance company and the doctor wrote a recommendation for an acute rehab center. There was no persuading the insurance company. Saddened by their decision, I searched for an alternative. I learned that not all rehab centers allow a family member to stay overnight with their loved one. I understood their concerns, but for our situation, I couldn’t abide by the rule. Although Rocky Mountain Care discourages overnight stays, they do allow it, so here we are. Another benefit of this place was that Mark had rehab here two years ago after three hospitalizations for blood clots. The admitting personnel and rehab coordinator were familiar with us. It has proven to be another blessing that we are here. We love the therapists. They work hard to help Mark gain improvement. We appreciate their knowledge and the equipment available. The in-house doctor, nurses and CNA’s are helpful. It may not have been my first choice, but I believe he is getting the best care possible.

Some days it feels like I’ve had more than my share of things not turning out the way I’ve planned, hoped for and worked diligently towards. However, when I look back on the end result, I realize it worked out for the best. I’m feeling fortunate as I recall these hidden blessings and realize there are many who support us. I’m grateful for each one of you and especially for our greatest advocator. He pleads for us and knows what is best.

Current Situation

I’d be willing to bet every caregiver has had to make a difficult decision concerning their loved one’s health and it’s hard to give thanks for all of it. For the past several months we’ve been struggling with what to do about Mark’s hip pain and the lack of movement in them, which makes every transfer tough. Because he can’t bend his hips at 90 degrees, his sitting posture is poor, causing spine and neck issues. We finally concluded that the situation isn’t going to get better on its own and without a total hip replacement his general health will decline. With his osteoporosis bone loss he has a risk of a hip fracture, which is why this decision for a total hip replacement has been difficult. Also, his muscles need to be strong enough to hold the hip replacement in place, which is an additional risk. When we weighed the risks against the probability of decline in his movement if we don’t go forward with the surgery, the scale tipped slightly in favor. Therefore, next month Mark is scheduled to have his right hip replacement done and in October he will have the left hip done. He will have a three day hospital stay and three weeks in a rehab center. This year will have major medical expenses, but we can give thanks to a skilled orthopedic surgeon, nurses and therapist who we put our trust in for his care. I’m sure there will be more lessons to be learned from this journey. I hope we will be a quick study.

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.

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.”

A Magical Adventure

In 1991, Mark literally slept in a coma through Mother’s Day, Memorial Day and Father’s Day. Not to mention my birthday and our twelve year wedding anniversary. Although he was awake for Independence Day, Labor Day, Halloween, his birthday and Thanksgiving, all those holidays were spent in the hospital for rehabilitation. We were overjoyed Mark would finally be home for Christmas. Last year I wrote what it took to get Mark home for the holidays. It’s one of my hardest, yet happiest Christmas memories so I wanted to share it again with a new twist.

Christmas can be a magical time, when wishes are granted and this definitely was the case for us twenty-three years ago. After eight lengthy months of hospitalization, I was finally able to bring Mark home —  just in time for Christmas. He was far from better and still needed extensive therapy and care, so I worked on establishing a “day- patient” schedule where he’d be there all day for therapy and I’d be able to care for him every night at home. At the time he wasn’t able to feed himself or take care of any personal needs. Mark’s doctor, Joseph Vickroy, and the rehab team of speech, occupational and physical therapist, requested that we spend several nights in an apartment-like room located in the center unit where Mark had been for six months. They felt it was important for me to understand the responsibility of caring for Mark before they released him.

I thought the request was trivial since I had spent every day with him and fed him most meals anyway; however, I understood their concern and agreed to do it. I spent several nights there and took complete responsibility for him. Our two children also spent a few nights there to understand what life would be like to have Dad at home. We passed the test and Mark was discharged from the hospital.

Once we realized Mark was going to be wheelchair dependent, we knew some home modifications would be necessary. In October 1991, we started building a large room which would become our bedroom with a wheelchair accessible bathroom off the back of the house. Fortunately, my dad and brothers work in construction and they were willing to do the job. My oldest brother, Mick, designed the addition with a ramp for the new back entrance. If you’re blessed to have a father who is an excavating contractor, “you can’t add a room without a basement.”

Top:        Left – Don breaking ground.          Right – Steve, Mick, Dad preparing for footings.
Middle:  Left – Dad trying to escape.            Right – Steve and Mick pouring footings.
Bottom: Left – Steve and Dad.                        Right – Mick, Steve and Dad laying cement floor.

Because they were building this addition on their own time after work, it was not completed in December. Despite the unfinished construction we wanted Mark home for Christmas. Mark’s care was physically difficult until the new bedroom and bathroom were finished, but well-worth all the effort to have him finally home. Our regular bedroom wasn’t big enough for all the equipment now needed for Mark. Our queen-sized bed had to be replaced with a single-sized hospital bed. At night, after I transferred him into bed, I would raise it as high as it could go and place my air mattress on the floor in the only space available — which meant my legs were tucked under the bed. Worried that Mark might forget I was there and use the controls to lower it, I would unplug the bed every night.

This sleeping arrangement made for nightly jokes. I often said as I unplugged the bed, “You are now out of control.” He teasingly replied, “But, I’ve got the top.”

Our living quarters were cramped and hard with the construction going on, but it was so worthwhile. My heart is filled with gratitude for my dad and brothers who made our home a place where Mark could live. Our trials were lightened by their skills and hard work. They opened up possibilities for our new circumstances.

Top: Left and Right – Don knocking out the brick wall into the new addition.
Bottom: Left – Chris, Katie, Dad and Mick nailing the top floor down.                                       Bottom: Right – Chris and Katie painting our the new room.

Chris Chipping, a friend and former employer of Mark’s, did the electrical wiring for our new addition while another friend, Walt Fisher, did the plumbing. It was a crazy busy home with construction going on for five months until the addition was completed. But, after eight months of living in a hospital — it truly was the merriest of Christmas’s to have Mark finally home.

In 1991 our world was turned upside down, but I learned “a magical adventure awaits those who venture forth.” The magic comes from the love of God, family and friends with a lot of hard work sprinkled in.

Finished room in March 1992. Christopher, Mark and Katie. Mark in our new queen-size adjustable bed.

Experience is a Great Teacher

While I appreciate the years of education a professional caregiver has, it’s still really hard for me to leave Mark at the hospital. I realize they can be an expert in their field working with people who have a wide variety of disabilities and illnesses. They may have the education and the skills of an excellent doctor, nurse or therapist, but that doesn’t make them an expert on the person they are treating. Even though I know this, it’s difficult to stay calm when they don’t know how to do something which seems obvious because it’s common to me such as transferring, bathing and the other daily tasks of caring for Mark.

The memory of three hospital admissions in 2013 for blood clots is still etched perfectly in my mind. They didn’t know how/or want to transfer him so he was bedridden for a few days. I watched him get weaker as they treated him like he could not move. I asked the doctor if the nurses and aids weren’t getting him out of bed because of the blood clots. He said no, in fact, lack of movement brings on blood clots. I asked him to please order Mark some therapy, which he did. To my surprise, the therapist wheeled in a bedside lift.

“I don’t use a lift to get him up,” I said.

“Well this one will not only help me get him up, but he can walk with this lift stabilizing him.”

I watched anxiously to see how this would work. The harness was complicated and appeared to be new to the therapist. Mark was in a weakened state and this method of getting up took little effort on his part. He wanted to help, but was confused by this foreign process. It took nearly thirty minutes to get him in an upright position, leaving little time for walking.

“He can walk with a walker,” I stated.

The therapist looked at me like I was crazy.

“I will bring it tomorrow and we’ll show you,” I said and the next day, I did just that.

With assistance from the therapist and me, Mark took steps the length of the hospital room. The therapist was impressed and amazed he could do it. I was shocked at how fast he had weakened because he usually walked better and much further.

It took the full month of August 2013 in a rehab center to build up his strength again. This hospital experience taught me I needed to let them know immediately Mark’s capabilities and I took the walker to the rehab center.

With the bitter taste of last year’s experience still fresh in my mind, I was worried about how this year’s hospital stay would go and decided I needed to be more assertive with the professional caregivers. Shortly after we entered his room and met the nurse and aide who’d be caring for him for the next two days, I asked, “Would you like me to show you how I transfer Mark into bed?”

“Sure,” they replied in unison.

Standing directly in front of him, I lifted his foot and I swung the leg rest to the side to move it out of the way. I followed the same routine with the other foot while Mark unfastened his seatbelt. With his feet on the ground and carefully positioned with the foot closest to the bed out in front of the other, I placed my feet in front of his to hold them in place. I wrapped my hands over his shoulders and tucked a few fingers under his arms. With my knees pushing against his legs, I pulled upward with my arms as he stood.  He’s 6’2” when he’s upright and his height usually surprises people when they see him stand for the first time. I used my legs to help direct him as we pivoted to the side of the bed and I lowered him to a sitting position. As he lay back, I picked up his legs and swung them onto the bed.

“You do this by yourself every day?” the nurse asked.

“Yes. It’s really not that hard after the initial pull. I use my knees against his to help him straighten upward.”

“It looks hard; you must be really strong,” she said.

Some people may take that as a compliment, but I felt like she was saying, that’s too difficult for us to do. I left for work worried that he would be confined to the hospital bed all day long and when I returned at night my worry was confirmed. Someone had even written on the white patient information board in his room “bed rest”.

My blood nearly boiled, but I took a deep breath and asked who wrote the “bed rest” order. No one knew, so I wiped it off the board. “He can lose strength so quickly and with me being the only one to transfer him at home, I need him to stay as strong as possible.”

“You have your routine and you’ve been taking care of him for a long time. It’s second nature to you, but it isn’t to us,” the nurse said.

I knew she was right, it is second nature to me and not to them, but I was also right, he needs to move to keep up his strength. By both of us being assertive and expressing our concerns, we came to an understanding with a plan for physical therapy while he was there. I didn’t necessarily like that they wouldn’t get him up and it’s hard for me to understand that some nurses and aides are not comfortable doing transfers, but we found some middle ground. I realize that rehab centers are different than hospitals where the majority of the patients are capable of walking or transferring into a wheelchair with minimum assistance and transferring Mark does take more assistance. However, I do it every day so it’s an obvious part of caregiving to me.

It’s not always easy to express what I think and feel in a positive way, creating mutual respect, when I view things differently than another. I don’t want to be passive by giving into what I don’t believe is right. If I don’t express my feelings, I get upset inside and after time it can build until I explode or become aggressive by yelling or being sarcastic. I don’t want to be disrespectful of others and their opinions. Being assertive is the ideal middle ground—where I want to be. Sharing what I have learned through my experience with professional caregivers can be intimidating and difficult. Tuesday I’ll share some great information I found on how to be assertive without offending another.

What positive experience have you had sharing what you know in a difficult situation?