Traumatic Brain Injury, the First 365 Days
To be honest, I entered late in this story and played only a minor role in what the reader will find a remarkable tale. That said, I have experienced the privilege of guiding a few families through similar journeys and I have attempted to help many other families when the outcomes have not been as favorable as in this story. Though I have never personally experienced the agony of watching one of my own children endure serious injury or life-threatening illness, I have often struggled with how best to help these families. I am generally an optimistic person, a person of some faith, in fact. However, is this the best attitude to adopt when dealing with patients and their families after this type of injury? I freely admit it is not always clear to me what influences the ultimate outcome of patients with severe brain trauma.
This account describes a year of roller-coaster emotions, dashed dreams and ultimately the bright hope of the Bullough family. Admittedly, reading about Adam’s experience was an excruciating experience for me because he suffered most of my worst patient-care nightmares. Neurosurgeons live by the “Monro-Kellie doctrine,” which states that within the fixed space of the skull there is only room for brain tissue, blood within blood vessels, and cerebrospinal fluid. Brain trauma causes swelling of the brain, which results in brain injury caused by the limited amount of space in the skull. Adam’s doctors had to manipulate his physiology to prevent the damage that could be caused by this swelling. He had a tube placed in his brain to divert his cerebrospinal fluid while measuring the pressures in his brain-termed intracranial pressure. When these measures proved insufficient he required the temporary (months-long—which, in Neurosurgical parlance, is a short period of time) removal of a portion of his skull to allow space for the swollen, inflamed brain tissue. His severe head injury further required the desperate measure of purposely cooling his body temperature below normal in an attempt to protect his brain from ongoing injury caused by brain swelling.
As if this wasn’t bad enough, as the intracranial pressures and brain swelling became more manageable, the focus of Adam’s caregivers (and subsequently his family) shifted to his pulmonary function. Adam’s decreased level of consciousness necessitated his placement on a mechanical ventilator. Lung infection—termed pneumonia—is an almost expected outcome of long-term use of the ventilator. The dreaded complication of lung injury in the mechanical ventilator-dependent patient is ARDS—Adult Respiratory Distress Syndrome. ARDS has many synonyms but the outcome is similar—many patients simply can’t exchange oxygen from the lungs into the blood stream and they die when their organs starve for oxygen. As with his brain swelling, when Adam suffered ARDS, extraordinary measures were required to improve his lung function, including the placement of a tracheostomy (surgical procedure to make a direct opening into the patients breathing tube and lungs), prolonged and complicated manipulations of his ventilator and oxygen levels, placement in his bed in the prone position, and the controversial use of nitric oxide.
Through nothing short of a miracle, Adam was eventually able to be weaned from the ventilator; he had his tracheostomy, numerous intravenous lines, and gastric feeding tube removed. This is where the real struggle begins—the long and arduous journey of recovery. The reader gains an inside look at the frustration that Adam and his family experienced as he relearned how to walk, speak, read, play the guitar (most important to him) and, eventually, drive. The struggles of sorting out the financial implications of a prolonged, serious illness with hospitalization requiring complex medical procedures will be all too familiar to others that have gone through this experience.
Even with aggressive treatment, a traumatic brain injury can change an individual’s personality considerably. I am often amazed at how a seemingly insignificant concussion can render a previously intelligent person incapable of multitasking, concentration, and functioning at their pre-injury level. Fortunately, with time, most of these repercussions disappear and the person returns to normal. With severe brain injury this is not always the case, but, especially in the young, it is a possible outcome. The unfortunate reality is that recovery takes time—not days or weeks, but certainly months and even years.
This book allows the medical practitioner, patient, friend, and family member dealing with severe head injury to experience the deeply personal and emotional struggle of Adam Bullough and his family through the eyes of his father Robert Bullough. This account has been stripped of all pretense. It is inspiring to read and describes not only the faith, prayers, and hope of this family but also their frustrations, doubts, and concerns for the future. This book will help physicians and nurses, as well as respiratory, physical, and occupational therapists to understand the struggles of their patients and their families. This book will bolster the faith of the family in the midst of dealing with a loved one with severe head injury. Finally, it is possible that someone currently recovering from traumatic brain injury might find comfort and hope for their recovery within the pages of this book.
—Randy Jensen, MD, PhD
Professor of Neurosurgery, Radiation Oncology, and Oncological Sciences
University of Utah
Traumatic brain injury. TBI. When the son of a neighbor was struck by a car while riding his bicycle and sustained a serious head injury, I recall asking questions about the nature and the extent of the injury. Until that time I hadn’t thought much about injuries to the brain. Who does? Our friend’s son recovered and an insurance settlement followed. Subsequently, this same young man took a tumble. Another head injury. This time the results were less favorable, and he changed, dramatically. He was no longer the person we knew. Often, when urging my own children to wear their helmets when biking, I invoked this young man’s name as a reminder and a warning of what can happen.
After a long day, my wife, Dawn Ann, and I had just crawled into bed on Tuesday, August 12, when the phone rang. Dawn Ann answered. Immediately she knew something was wrong. Kirby, our son Adam’s girlfriend who he was visiting in California, tearfully began speaking. She was phoning from Mission Hospital. Adam had fallen while they were riding their bikes, she said, and he was badly hurt. Somehow he had gone over the handle bars, landed on the pavement, bounced, hitting the back of his head, hard. He was then in surgery. The extent of his injuries was uncertain but they were serious. He was not wearing a helmet. We phoned our other children to tell them what had happened. Joshua and his wife Vorn, Seth, and Rachel, who was living at home, joined us for a family prayer on Adam’s behalf. Additional phone calls followed; and we were told that it would be wise for us to get to California as quickly as possible. No flights were available from Salt Lake to Orange County until morning. At 1 a.m. Dr. Massoudi, a neurosurgeon, phoned from the hospital to tell us that Adam was in critical condition with a traumatic brain injury and that the surgery had gone well. Dr. Chang also phoned asking permission to conduct a bronchoscopy. Adam had aspirated vomit. Unable to sleep, at 4 a.m. we began packing to leave not knowing how long we would be away from home or what we would find once we arrived at Mission Hospital. Before departing for the airport we phoned our parents to tell them what had happened. Just a month earlier Dawn Ann’s mother had died suddenly, and we did not want to add to her father’s burdens. We arrived at Long Beach Airport at 9:20 a.m. where we were met by Kirby’s mother, Heidi, and a family friend, Jay Mortensen, who drove as quickly as he dared to the hospital. Mostly no one spoke.
There are many causes of traumatic brain injury and symptoms vary from mild to severe depending on the extent of the injury. Our son’s injuries were very severe. His fall crushed much of the back of his head. Each year in the United States 1.4 million people sustain a TBI. Of these, 235,000 are hospitalized and 50,000 die. Most traumatic brain injuries result from falls (28%), followed by motor vehicle crashes (20%). Assaults account for 11% of TBIs. Young men, like Adam, age 24, account for most serious brain injuries. TBI is a major issue for active duty service men and women in war zones. Estimates are that about 2% of the U.S. population, at least 5.3 million people, require long-term assistance with daily living because of TBI. The direct and indirect costs of TBI are staggering, running into the tens of billions of dollars. Some policies make matters worse: A few years ago the legislature of our state, Utah, repealed a law requiring motorcycle helmets as an infringement on individual rights—and many millions of dollars in medical bills and much unnecessary heartache have followed.
Adam’s Fall: Traumatic Brain Injury)—the First 365 Days is written for family and friends of survivors of TBI, medical personnel, including those who care for them but also those who educate caregivers, and therapists. It may seem presumptuous to claim to have written something of value to medical personnel. This belief is based on numerous conversations with physicians, nurses and respiratory, occupational, speech, and physical therapists. For those physicians, nurses, and therapists battling TBI, the work is physically, intellectually, and emotionally exhausting; there is nothing quite like it. There are remarkable highs and devastating lows, when, despite having done all that can be done for a patient, something still goes wrong and the outcome is terrible—a life worse than death. Time and again we have been told that one of the key variables in the successful treatment of TBI is existence of an extensive and strong network of supportive and determined family and friends. Treatment is most effective when medical personnel—physicians, nurses, therapists—collaborate fully and engage the patient’s family completely. To this end, knowledge of the family side of the treatment equation is indispensable. For family and friends of TBI sufferers, knowing something about the treatments being given to their loved ones is helpful as is knowledge of the range of issues that quickly follow injury, issues that can and often do prove overwhelming. Family and friends need to know that they can and should play a central role in the treatment given, that they should not hesitate to ask lots of questions, and that there is help available to them even during the darkest of days. For each of these three audiences, there is another reason for writing, perhaps an even more significant reason: to share a message of hope.
Hope is a mixed emotion. Often confused with optimism, hope is composed of a cluster of competing sentiments—dread and fear on one side, confidence and trust on the other. Unlike optimism, which brings with it an expectation of a best outcome, at least as commonly understood, hope may be present even in the most dire of circumstances and despite recognized limits to one’s ability to alter and improve a situation. At such times, to maintain hope we may look outside ourselves for comfort and to cope. As such, hope serves as a basis for remaining actively engaged in life and not merely positive about it. Indeed, hope keeps us engaged and working when the smart money says give up; and, when we simply must let go and give up or in, hope often returns but in a slightly different and more mature form—flowing out of a deepening sensitivity to the full range of human experience it comes as a determination to find something good and positive in what otherwise is dreadful, an affirmation of the worth of life and the value of living despite life’s challenges. There is a profound realism about hope that is lacking in optimism for hope acknowledges the very real possibility of failure. Because hoping takes us beyond our normal abilities, favorable, although often unexpected outcomes, may follow. To receive them is to live in a state of grace for a time, of having been given an undeserved gift, a miracle. Hope directs our attention simultaneously inward and outward, toward our own vulnerability and dependence and toward the well-being of those who matter most to us, those whose lives are inextricably intertwined with our own and who give our lives meaning and purpose. Hence, to give up hope is to give up, and what is given up is something profoundly beautiful, our very humanity.
Although tied to temperament, hope is both taught and learned. And individual hopefulness is embedded—for good or ill—in the hopefulness of others. Human networks of hopefulness or despair form and, having formed, tend to grow. Thus, some families and some cultures, including the cultures that form at work, like some individuals, are more hopeful than others and these cultures encourage individual resilience, the ability to bounce back from failure. By their very nature those who work successfully within high stress and emotionally demanding occupations like those of the Surgical Intensive Care Unit (SICU) at Mission Hospital are hopeful people. Yet, even they need help to maintain hope. Within high stress occupations a key to maintaining hopefulness is achieving valued outcomes, trust in others, consistent investment in learning and development, and recognition for and celebration of work well-done. To this end, the end of celebration, this book is dedicated to the men and women of the SICU at Mission Hospital as a token of our love, gratitude, and deep respect.
A word about reading Adam’s Fall: Traumatic Brain Injury—the First 365 Days: This is a profoundly personal book, perhaps a bit too personal in a few places. Believing that others might benefit from his experience, Adam wants his story told. In times of deep crisis we find out who we are and what we most value. Adam has proven himself resilient and, I believe, courageous even as at times he has battled deep discouragement. We are proud of him.
To understand some parts of the story a little background information is needed, particularly information about our family. Otherwise here and there some of what is written will make no sense at all. Our faith and its supporting rituals gives form and substance to our lives. We are members of the Church of Jesus Christ of Latter-day Saints and believe in the efficacy of fasting and prayer as means for finding meaning and for coping with life’s challenges. Each of our three sons have served two year “missions.” Adam met Kirby and her family while on his mission in Southern California where he served and came to deeply love the Spanish language, and Latin cultures and peoples. At the time of Adam’s injury I was serving as a lay minister, a bishop, which involved Dawn Ann and me intimately in the lives of about 280 single young people ages 18 to 31. For ten years Dawn Ann has been an elementary school teacher. The spring prior to Adam’s tumble she had applied for and been given a new job, school librarian. In her absence, two substitute librarians kindly assumed her duties. I am employed by Brigham Young University and work in the Center for the Improvement of Teacher Education and Schooling. We live in downtown Salt Lake City but I work in Provo, Utah, 45 miles to the south. Prior to his injury Adam taught P.E. on Mondays and Wednesday’s at his mother’s school, worked at the Children’s Museum building displays, and took classes at the community college.
The organization of Adam’s Fall: Traumatic Brain Injury—the First 365 Days is unusual and as such may place a few unexpected demands on readers when tracking the story line. There are no chapters per se, although there are sections with thematic headings. Rather than assume a traditional narrative structure, the story primarily takes the form of an epistolary. Since before our children were born I have written letters to them detailing an assortment of life’s events. When Adam was injured I continued to write finding solace in writing. These letters, entries in my personal journal written after Adam’s fall and during his treatment, comprise the bulk of the book which might be visualized as a May pole with three interwoven streamers. The pole is composed of parts of letters from my journal which are introduced with a date and the words, “Dear Adam.” The streamers fill out the narrative. The first streamer is made up of entries written on CaringBridge, a web site provided by Mission Hospital that enables family and friends of critically ill patients to receive daily updates that can be accessed easily by computer. Caringbridge entries appear throughout the text and are introduced in this way: “Dear Family and Friends.” The second streamer is composed of brief entries from letters written to our children throughout the years and prior to Adam’s accident. These are included because they provide a sense of Adam separate from the injury and recovery narrative. They are indented, italicized, and introduced in this way: “Memory: ...” Finally, a few Medical Memos are included, also indented and italicized. The Medical Memos are drawn from a variety of sources—references are included—and provide information that some readers will find useful for making sense of what, medically, was either being done to and for Adam or taking place within his body. Over the past several months we’ve learned a great deal about brain injuries and their treatment. Lastly, I should mention that many of the names included in the narrative have been changed as seemed prudent and proper.