By Beatrix Newman
When I first met Sarah Johnsen, it was March 21, 2002, at ICU of Robert F. Kennedy Hospital, in Hawthorne, Calif. Although I’d heard a lot about her, from my son, Christopher, I never expected that I’d meet her in the life and death circumstances we found ourselves in. My firstborn, my blue eyed, full of life son, had experienced a sudden, unexpected and devastating cerebral hemorrhage that morning, and now he lay, after all day brain surgery, in a coma, on a hospital bed. Sarah had gotten to the hospital earlierin the day, as my husband and I were living in Oregon. This was the first day of spring break, and we had not boarded the plane until nearly 7 hours after Chris had the brain hemorrhage.
The news was dire, and we were told that Chris would very likely not survive the first 24 hours after the brain surgery. I entered the waiting room of the hospital, saw Sarah’s tear-streaked face, and we embraced. Sarah was the love of my son’s life and little was he, or I, to know the role that Sarah would play in his life over the next 3 years. From the very first moment, she was an ally, a shoulder and someone I consulted on matters regarding Chris. I found in Sarah not only a kind heart and a warm and loving demeanor, but intelligence and an unexpected gift for treating the fragile and very ill. Over the next few months, this proved invaluable and over the next few years, it meant a world of difference in the quality of life Chris would have.
The news was hopeless from the word go. The word “catastrophic” waited for us around every corner. The doctors painted only the most dismal pictures of the future. I chose not to believe them, and Sarah backed me up at every turn. She tirelessly sat by my son's bed and thoroughly learned, in short order, how everything that sustained Chris functioned - all the tubes, the machines, the beeps, the vials, the charts and all the other medical equipment designed for the critically injured or ill. Although we had some phenomenal nurses, we learned very quickly that to simply trust Chris to the care of the various shifts of nurses and CNA’s, was to hand Chris a possible death sentence, or at the very least, a good deal of discomfort. I earnestly searched the internet for answers while Sarah learned how to care for the tracheotomy, tend to the tube that fed Chris, check and deliver the oxygen he needed, position him in bed, suction him efficiently and with the least trauma. By helping me care for Chris and his needs, she allowed me the time and peace of mind to search for a succession of better hospital environments and to finally relocate him to Emanuel, a hospital in Portland, Oregon.
Against all medical predictions, Chris not only survived, but within 12 days of the brain event, was breathing on his own. During the 5 weeks he was in California, I had to come up to Oregon in order to check on my three younger children, as well as to secure a good Trauma Care Center for Chris. I knew how important it was to have someone watching, and by his side at all times. Over his many different hospital stays, I saw how he would sometimes not be turned for over 4 hours at a time. Sometimes he was treated like a sack of potatoes, and occasionally, even highly important steps in the treatment of trachea, feeding tube and port to his heart, were not carefully observed. On certain occasions, as is often the situation with people in a coma, hopeless and wounding things were said in his presence, due to the belief that he wasn’t aware enough to understand what was being said. We couldn’t always be there, and occasionally this resulted in mishaps.
With Sarah’s help, we minimized the opportunity for mistakes to occur. Together we battled for awareness that Chris, even in his state, could hear and understand, and thankfully were often successful in our quest to keep Christopher hopeful and to improve his treatment and condition. I was able to leave for 4 days, not only after the first three weeks, at a most difficult time, but on other occasions as well. Sarah was there, when I needed to go check out colleges for my daughters, work, tend to my 11-year-old boy, or take a needed overnight vacation. After Sarah helped me move Chris from California to Emanuel Hospital in Portland, Oregon, she decided to move close by and help me care for Chris. By the time I brought him home, still in a coma, we had been through three major hospital ICUs, one second tier hospital, and one skilled nursing center. We figured that in no other place but home was Chris going to get the loving care and comfortable surroundings he needed, as well as a substantial chance of survival.
Through the course of Chris’ hospitalizations we’d had some very good and caring doctors and nurses, but we’d also had several near misses, at least two of which were directly related to negligence or oversight. On one occasion, it led to septicemia and Chris almost died. When the decision was made that Chris would come home and I would have to assemble a team of CNAs to work with him, as well as essentially prepare as close to a hospital environment as I could, Sarah chose to move close to the Portland area. She also felt, at that time, a heart for nursing as a profession. I concurred readily and of course, was very grateful to have this very kind and efficient young woman by my side. The hospital prepared all the people who were going to be part of my team at home and would be there nearly round the clock. Sarah learned easily, was efficient, thorough and when the need arose, creative. She learned physical therapy from the physical therapists, respiratory therapy from the respiratory therapists, nutrition through feeding tube, medication, hygiene, and more, to care for a young man who could do absolutely nothing for himself.
After Chris came home and occasionally had to have hospital stays, I kept my best caregivers with him at the hospital, including Sarah, when I couldn’t be there myself. My caregiver team was always accepted, and allowed to perform most duties, including suctioning and trachea hygiene. In the small town of Newberg, Oregon where my family lived, my team was known as exceptional and I believe that Sarah is not only an exceptional caregiver, but that that she will be an exceptional RN. Due to the wonderful physical care, the love and excellent physical therapy he got at home, Chris was in good shape, no sores, and very limber, in spite of his inability to turn himself and easily move. Sarah was part of the reason why Christopher defied the odds, and improved and even thrived in ways that baffled many of the doctors who were in charge of his care.
Sarah was instrumental in his recovery, even though many believed he could not recover or understand everything that was going on. She tirelessly implemented not only the ongoing physical therapy several times a day when she was in charge of his care, but she also worked with me to devise new and creative ways to elicit response. This regimen included movements, questions followed by guided response, use of cold, hot elements, stimulation, reading hours on end, use of toys, tools, shells, whatever was at hand. We were a good team and Chris profited from it. In time, he recovered the ability to say yes, no, even if it was just with his head. He recovered voluntary movement and ability with his the left hand, and later, with his right foot. He was able to communicate that he understood what was going on, and respond, even if he couldn’t always do it to the extent or in the manner he would have preferred.
Sometimes he was actually able to perform a little skit, a little joke, to make us laugh, and to let us know his mind was still there. Christopher passed away, on October 10, 2005, due to pneumonia. Before he died, Chris was able to smile, to kiss, to let us know what he wanted or didn’t want, to hold himself sitting at the edge of a bed, to go to the movies with the family or the caregivers, to show he cared. He could kick a ball while on his wheel chair, with either foot, he could follow commands to the extent his limbs could move. Although he’d recovered the ability to move his right arm and hand about 9 months after his brain event, before he passed away, he had worked up the ability to lift his right arm, when asked to do so, which had been immobile for nearly three years. This was in part due to his immense will to live and courage to do what it took, in spite of the pain, difficulty and disappointment. But it was also in great measure, due to being blessed with a loving family, a stubborn and relentless mom (me) and exceptional caregivers.
Sarah was not only a loving human being that strived to help Chris be comfortable and successful, but she was also a dedicated and thorough caregiver. She seemed to instinctually know what to do and what was right, took the time to learn what would be the best care for a very at risk and fragile person, and delivered beyond all expectations. She lived in Vancouver, Washington, yet, for nearly two years, travelled several times a week to put in an 8-9 hour shift with Chris, in Newberg, Oregon. There wasn’t one critical care function she couldn’t perform. Sarah was above the norm, dedicated, sensitive and astute, able to read signals, even subtle ones and avert major setbacks or emergencies. She knew how to deal with seizures, infections, MERSA, and other afflictions that visit those who spend time in hospital environment, or whose immune system are at risk, due to catastrophic illnesses or accidents.
I never doubted that Sarah would make an amazing nurse. The challenges she faced in pursuing this avenue were mostly financial. Sarah had lost her mom tragically, only two years before Chris’s brain hemorrhage, and had to support herself while going through the preparatory courses, delaying the time it took to reach her goal. Meanwhile, the ways in which she supported herself, only increased her future ability to deliver top notch care to her patients. She trained to be a doula and care for expectant moms and newly born babies, and she presently earns her living coaching adult learners via a program that helps students nationally.
As much as my family would have liked to, we were not in a position to help Sarah financially. I am certain that nursing is Sarah’s life vocation and I believe that given the opportunity, Sarah will be delivering sterling care in a major medical facility in the very near future. It is my dearest wish that the means to do so will be there for her, and I have faith that this will happen, because in my opinion, this is an area where Sarah will make an invaluable contribution to society.
Sincerely,
Beatrix (Bea) Newman
Beatrix (Bea) Newman
