Stories of Hope
Many patients in the Neuro-ICU have suffered serious brain injury and may be comatose or minimally responsive. This can be a very frightening time for both patients and family members. We know that for some patients, neurologic injury may be permanent or devastating, but there are many stories of hope, and we would like to share some of these that come from the perspective of the medical community (physicians, nurses and nurse practitioners) and also from patients and family members.
Physician perspective: Stephan Mayer, MD, Columbia University
When a 31 year old stroke and seizure patient, who had been comatose for weeks, walked into Dr. Mayer's office nearly a year later, he reacted with shock. "When he walked in, I almost fell over. I really thought there was no hope. It was at that point that I realized that we knew absolutely nothing about the recuperative power of the brain." As the field of neurocritical care advances and pushes the envelope of technology and innovation, hope is renewed for patients who once were consigned to death or severe disability. "Doctors are telling people there's no hope when, in fact, there is. We have to push the envelope and do things that at least are well-grounded in the scientific evidence that is available," Dr. Mayer notes. Remarkably, the patient later said he was able to hear nurses and doctors speaking about him, even when he appeared to have limited brain activity. According to Dr. Mayer, "[The patient's] great recovery reflects the brain's innate resilience and ability to recover, which I believe has been vastly underestimated to date. It has been underestimated because we never saw any long-term outcomes, because we have always let them die assuming the outcome would be terrible." Today, many neurointensivists apply a variety of new monitoring and interventional techniques that are improving outcomes each year.
Patient perspective: Crystal wheeler
"I am Crystal Wheeler, a 33-year-old wife, mother, daughter, sister, and friend. Before November 9th, 2006, I had long hair, weighed 110 pounds and was teaching in the NYC public school system. On November 9th, 2006, without warning, I began having seizures. Little did I know I would be diagnosed with viral encephalitis and status epilepticus, and thanks to my doctors and nurses, I am here to tell you that I survived.
I will try to explain how I got through the most awful time of my life. My mother will say that when I was admitted to the hospital, the doctors put me into an induced coma to stop the seizure activity. After 40 days, I was taken off my sedation and miraculously began following commands and woke up. During that time, my family went through torture, not only because it was the holiday season, but because I also had three young children. How do you explain to an 11, 5 and 6 year old what happened to their mother or where she went? Here one day, gone the next. "It was very hard," says my husband. Though, with family and friends helping him through this, the children and he remained grounded.
After coming out of the coma, it was still a long road ahead. I developed a bed sore from lying in the bed for so long which turned into a stage IV infection. I had a blood clot in my arm from the intravenous lines and tubes. I had to learn to go to the bathroom on my own, talk, breathe, sit up and now walk with bent legs because of the contractures in my legs (which made my knees bend forward). It has not been an easy road at all, but each time I was hit with another blow, I came back swinging harder and harder. Most doctors gave up any chance of recovery. They thought that even with the slim chance of survival, I would not be able to remember anything, spell or even be my former self in any way. However, a year later, I am happy to report that although I am at times forgetful, most of my memories have come back and most importantly - my life has been returning. I thank my neurointensivist for being the one doctor to not give up hope on me. If there is anyone reading this, I urge you not to give up hope either. No matter how bad it may seem, you must believe that there is always hope. Once considered the hopeless, I am now the hopeful."
Family perspective: Faith Model
"My brother, Bobby Model, suffered a traumatic brain injury on June 7, 2007, when a cement block came through our windshield while driving in South Africa.
For weeks, we were told there was very little hope that Bobby would ever regain consciousness or any sort of purposeful existence. As a family, we refused to buy into this prognosis and chose instead to move forward with absolute hope that Bobby would fight this and pull through. A month after the accident, we flew to New York, and Bobby was admitted into the Neuro ICU at Mount Sinai. He arrived in septic shock and again, things appeared grim, but in this new setting we held tightly to the hope and belief that Bobby would somehow come back to us. After a few weeks with some phenomenal doctors and a collection of incredible nurses dedicated to Bobby's recovery, we saw our first glimmers of light as Bobby's infections subsided, and he seemed to be tracking voices. As we navigated through the complex and foreign world of medicine, we kept vigil from the ICU to the regular floor where Bobby began to respond to some simple commands, much to the enthusiastic delight of everyone. With these developments, we continued to hold, with ease, the hope and faith that Bobby was en route to rejoining the world. And despite setbacks that included several surgeries and more stints back to the ever familiar ICU, Bobby slowly but steadily progressed, and one day we began discussing rehab. After three and a half months at the hospital we flew to Denver where Bobby was eventually admitted to a center for traumatic brain injury rehabilitation. Bobby is now getting firmly grounded on the road to recovery and to regaining his life. While there is still work to be done and a road ahead, this is now a time of new beginnings, possibility and a renewed faith in faith."
Nurse perspective: Mary Presciutti, RN, CCRN, CNRN
"I've worked as a nurse in neuro-intensive care for over a decade. Most patients in the neuro-intensive care unit are comatose, which makes the link between the nurse, the families and the rest of the medical team, delicate and vital. These patients often suffer catastrophic neurological injury, which sometimes translates to poor outcomes. It is for this reason that nurses have a place, a unique role in caring not just for patients but also their families. Faced with varying stories and narratives from families, nurses are often challenged as they try to balance both the physiologic and psychosocial needs of the patient as well as the psychosocial needs of families. For example, what does one say to a husband when his young wife, 33 years old, is admitted in the ICU following a hemorrhage in the brain? One certainly knows that her hospital course is just beginning, that even if the aneurysm is treated, no one knows if she can walk or talk again. Or to a couple who have been married for over forty years, and now the wife presents with a devastating stroke? Or how often are we asked "She's sleeping, she's not in coma, right?" We all know the old cliché that sometimes patients often get worse before they get better. Families experience a wide spectrum of emotional feelings.
In the summer of 2001, I became yet another statistic in joining patients who've had suffered a brain hemorrhage. My world came to a devastating halt when I myself had a subarachnoid hemorrhage from a ruptured aneurysm. Having the worst headache of your life feels similar to being hit by a shovel. I can still feel that sudden warmth and bang that knocked me unconscious that day. I had an aneurysm burst, and this time I was being cared for by my colleagues. Having spent many days in the ICU as a patient, I experienced being in coma, then waking up confused and not being able to speak properly. My aneurysm also took the vision in my left eye temporarily. It was all too familiar and frightening. I felt cheated! I've been asked many times if it is difficult for me to continue to work in a place where it is a constant reminder of that horrible summer. Working in the neuroscience ICU is a very special place. I was cared for by a dedicated team of physicians, surgeons, nurses, therapists, social workers all of whom made my recovery possible. As a survivor and a nurse, the experience has certainly made me a better person. It has strengthened me both personally and professionally. Most especially I have become a more compassionate and empathetic nurse.
I remember a patient who had a brain hemorrhage who spent weeks in our ICU. His family stayed with him almost every day. There were days that it was difficult to see both patient and his wife. She was going back and forth taking care of their kids and coming to the hospital. He instead was getting sicker by the day. We were concerned that she could've gotten sick as well. We held many conferences with her including the medical team, social worker and the priest. She didn't seem to be receptive at first; she was angry. It wasn't until he was discharged and spent months in rehabilitation that they decided to stop by one day in the ICU. She had tears in her eyes; the only thing she said was thank you.
It is easy for nurses to insulate themselves in the multitude of tasks that need to be performed. Yet, it is imperative to lend a sympathetic ear, to spend time and explain the current state of the patients or, as may be required, refer them to their appropriate physician/surgeon. Incorporating a multi disciplinary approach with social workers and pastoral services will help the families as well. In a hurried high tech environment one still has to be able to relate to the humanistic aspect of their needs. Families understand that nurses, among the hospital staff, are the ones who spend the most time with their loved ones. So the families often look to nurses for answers: answers that we may not have or only time possesses. Or there may even be no answer. Yet, it is part of the patient's family's struggle.In putting ourselves in their shoes, maybe the best answer to their question is to just listen and be empathetic. Our caring action is one of our best interventions."
Nurse practitioner perspective: Ruth Levy, RN, MA, CCRN, ACNP
"My Name is Ruth Levy and I am an Acute Care Nurse Practitioner (ACNP) in the Neuro-Intensive Care Unit (ICU). As a member of the interdisciplinary health care team, my primary responsibilities include assessing and managing acutely ill patients in the Neuro-ICU and facilitating and improving communication within the team as well as with patients and their family. My objective is to enhance patient care while decreasing length of stay, improving patient/family satisfaction and ultimately providing individualized quality care.
In any ICU this daily mission can be daunting, but it is attainable with a health care team that is dedicated, knowledgeable, supportive and most importantly compassionate. The core philosophy of my practice is to provide individualized quality care that is compassionate. But what inspire me to work in such a challenging environment are the incomparable stories, hopes and dreams of my patients and their family.
I would like to share a recent experience: One morning at the end of a very hectic work week, as I was walking towards the Neuro-ICU, my stress levels were high and my face drawn in anticipation of the day ahead of me. As I mindfully started to sort and prioritize my day, the double doors opened to the unit and I remembered saying to myself, "Here we go!"…Patients to examine; procedures to perform; staff members waiting to discuss the plan of care; orders to be entered; consults to be called; family members to meet and update were just a few things I was expected to triage in that first few minutes of my work day. As I barely made polite salutations to the Neuro-ICU staff, my mind was multi-tasking; then suddenly a gentle tap on my shoulder…and before I could say "one minute," my tense face softened to a smile. A patient's husband was thanking me for taking the time to discuss his wife's condition and plan of care. His wife had just had a seizure and re-bled overnight after a craniotomy was performed to re-sect a brain tumor. It was a highly tenuous situation, and his wife's condition was unstable. His love and devotion were inspiring. So I refocused to a more personal level and, in doing so, changed my day and most importantly the day of my patients and their loved ones.
Honest interchanges, as I personally described, are the crux and the most important and meaningful part of my day. Living in the present moment and simply listening to others' thoughts and concerns, then responding compassionately, honestly without judgment, are virtues that should be applied in all aspects of life. The Dalai Lama once said, "If you want others to be happy, practice compassion." In the ICU a compassionate approach to patient care enables me to personalize a highly technical environment.
An emotionally charged and hectic day can easily make you lose focus of what really matters in the business of caring for others. I was reminded that simple little things that occur naturally and don't seem like much, such as human interactions, can truly make a difference in one's day. As a Nurse Practitioner, it is my interactions with YOU, the patient and the family, that fuel my commitment and drive, and it is your courage and unwavering strength that give me hope and determination as I am continually challenged and dually inspired."
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