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!

Survivor—Nich’s Story Update

On February 16, 2014 Jamie wrote Survivor—Nich’s Story. I invited her to give us an update, which she graciously accepted.

Written by, Jamie Sorensen

February seems like such a long time ago. We celebrated our six-year wedding anniversary and we’ve all got another year older! Since I last posted Survivor—Nich’s Story, part 2 back in February, there have definitely been a few changes in our lives. Unfortunately, Nich’s seizure activity has become more frequent, more severe and the recovery time has increased substantially.

In June, the neurologist that Nich’s seen since his car accident in 1999 retired and the entire practice closed. To make things even more difficult, they didn’t have any recommendations or referrals. After seeking advice from Nich’s neuropsychologist and our good friend “Google”, we were given the name of one of the top neurologists in Utah. The doctor reviewed his 15 years of files and decided to take him as a patient.  With epilepsy increasing in activity and severity, we discussed some different options. We’ve decided to go with a VNS (Vagus Nerve Stimulation) Therapy, which is basically a “pacemaker for the brain”. During the surgery, a small device is placed just under the skin up near the collarbone, and a wire runs from the device up to the vagus nerve in the neck. A special magnet held near the device triggers it to deliver a burst of stimulation, outside of the regular programmed intervals. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. For the most part, he’s able to “sense” approximately 75% of his seizures.  We are hoping and crossing our fingers that the VNS will help in decreasing his seizure activity, as well as helping the recovery process afterward. The surgery is scheduled for October 10th.

As Nich’s caregiver, I’ve had to learn to cope with the ever-changing and increasing seizure activity. It’s been really emotionally and physically exhausting. I have felt so helpless at times. If you’ve ever had to watch someone go through a seizure, you know exactly what I’m talking about. I have such a hard time leaving him when I have to go to work each night. I feel like I’m abandoning him as I back out of the driveway. I wish I could stay home to take care of him full-time and do more to protect him. My heart breaks a little bit every time Nich calls me while I’m at work crying, not knowing what just happened and why his entire body hurts. I want to run to my car and drive straight home to comfort him. I hate seeing my husband, my best friend, my whole world, scared and in pain.

Last month our daughter, McKenzie, actually witnessed Nich having a seizure. Even though we’ve talked about it a million times and have gone over “instructions” on what to do, she admitted that it was scary to see her Dad like that. Later that night, I talked with her and explained everything that had just happened. I walked her through what to expect when Dad has a seizure. It helped her to realize what a seizure really looks like, instead of just hearing about it. Now that she’s seen it, she isn’t as scared anymore.

Coping with being a caregiver can be difficult at times. One of the ways I cope is through writing.  I love to put my thoughts onto paper. I may not share them for the most part, but it seems to help. I love reading. I love listening to music. I’m that lady in the car on my way to work with the radio blasting, singing to myself. For the most part, the only time I really get to be by myself is during my shower, the drive to and from work, and of course the bathroom! I’m still trying to find more ways to cope and get things out instead of letting them build up inside. I admit I need to do a better job of taking care of myself. I need to sleep more, work out, eat better, etc. I need to make time for myself, even if it’s just 30 minutes to read or take in a movie, taking time to rejuvenate, so that I have the energy and strength to care for those I love. I don’t know how, but I need to somehow find the time.

I’ve been a little lost along the way in the form of support. There aren’t very many people I’ve come across who can even remotely understand what I’m going through. My husband found the perfect quote online the other day. “The emotional and physical abuse your body goes through having epilepsy is almost impossible to explain to anyone who doesn’t have it themselves. It’s frustrating trying to explain the overwhelming emotions you have right after a seizure.” This is the same for those of us who have to watch a loved one during and after a seizure. It’s not easy trying to explain to people what we are dealing with or going through.

Being a caregiver has truly been an extreme blessing in my life. Yes, it is tremendously challenging and can sometimes push me to the limits.  However, it is also abundantly rewarding.  I love taking care of my husband. I’m proud of my family and what we do for each other. I love knowing I am here for him when he needs something. I am grateful for the lessons my children are learning.  They are becoming so responsible and so grown up. I love that they worry and get concerned. I love that they can now pick up on Dad’s “bad days” and know when he’s just simply “off”. They put others before themselves.They pick up the slack and chip in whenever they can. I couldn’t have better kids!

Earlier this month, I wanted to do something to connect with my husband and to show him how much I truly love every part of him and to remind him that I married him “in sickness and in health”, so I designed a tattoo. We went together and got our tattoos of purple and green ribbons. The green is for TBI (Traumatic Brain Injury) and the purple is for Epilepsy.

Nicholas is truly an amazing person.  He is one of the strongest people I know. I admire his drive and passion for life; he honestly never gives up! No matter what cards he’s dealt, he always finds his way through the challenges. Nich is such an incredible father and is constantly making sure that the kids and I are happy and have everything we could ever hope or ask for. I couldn’t ask for a better partner in life. I love knowing we get to spend the rest of our lives together. I am proudly a Caregiver for life.

Thank you Jamie for sharing your story. We wish you both the best in the upcoming months and hope the VNS helps Nich’s seizures! It has helped lessen Mark’s. We’ll look forward to hearing how the surgery went and the improvements it makes. You and Nich will be in my thoughts and prayers.