Caring for an Angel Has Challenges
By Mary Beth Mondello, CNRN
I have been a nurse for 22 years, the last 10 in the Neurological/Neurosurgical ICU. Over the years, I have cared for many patients and families who have challenged me, but caring for Angel was one of the most difficult experiences of my entire career. At the end of my shift with her I found myself physically and emotionally exhausted, and yet I will always be grateful I had the privilege to care for her and her family.
Angel was a senior in college majoring in elementary education. A loving daughter, she was deeply involved and committed to her family, friends and to her community. In late October, all would change as she complained of nausea and vomiting and visited her PCP, and when these symptoms continued, her local ED. Thinking it was just a stomach virus she was sent home with medications and the knowledge all this would pass in a few days. The next day she began to experience a severe headache, vomiting and progressive mental status changes. Her family called an ambulance and she was sent to a local ED. A CT scan was done and showed a lesion in her left frontal lobe. Her neurological status continued to decline, and she was intubated and transferred to the BWH Neuro ICU.
I met Angel the next day and immediately became one of her primary nurses. As we worked to stabilize her we frequently asked, “What is happening to her?” There appeared no clear-cut diagnosis, just a growing list of symptoms, confusing test results and a variety of opinions. As the various teams consulted and opinions were offered the family turned to me for assistance in sorting out what was being said and done and what the prognosis was. For members of the health care team, the unknown challenges us and our thinking. For a family, it makes a terrifying situation even more so. To be able to name what is happening can make it manageable with a clearer course that they can track. Angel’s family did not have that, and as the days turned into weeks her mother would ask me, “Mary Beth, how do I give up hope, if we don’t even know what is wrong with her?”
Angel’s parents stayed at her bedside throughout those first six weeks, her father leaving then to return to work, and her mother, J., staying on. My work was to support her, to guide her, keep her informed and to advocate for her and Angel. A close friend, whose son was being treated at Children’s Hospital, often joined J. at the bedside. While this provided support for J., her friend’s intense questioning and opinions on Angel’s condition at times would unintentionally add a burden to J. One day she asked me to speak to her friend and tell her to back off. I told her that I would not do that but that I would help her have that conversation. I knew that in the months and years to follow J. would need to advocate for herself and Angel, and I wanted to help her with this. We practiced what she could say and how she could say it. I suggested that instead of sitting at Angel’s bedside all the time, J. and her friend could go off the floor for a walk. J. had the conversation, and it went well and the two remain close and supportive friends.
Angel remained in a comatose state and so I turned to her family to introduce me to Angel, and they did describing a young woman who put everyone else and their needs before her own and would never hesitate to help others. It was clear that seeing her daughter in her current condition was very difficult, but what was also clear was she would do everything to have her alive and back home.
We finally were able to diagnose Angel with acute disseminating encephelomyelitis, which meant the entire white matter of her brain was inflamed causing swelling to the point of herniation. She was emergently brought to the OR to relieve the pressure and a shunt was inserted to maintain the pressure in her brain. She developed multiple complications including sepsis, cold agglutins which caused her blood to clot and lead to massive necrosis of her skin requiring debridement and intense wound care.
Through all of this, her mother was at her bedside. She joined us in caring for her daughter and also stepped out of the room if it became too much for her. J. would often ask me, is Angel going to be all right? While there is the desire to ease the family’s pain and fear, to be less than truthful can destroy trust. I told her, “I can’t always give you the answer you want, if I did, I would be lying, and I want you to know that what I tell you is the truth and that I will always be honest with you.” I always was.
Two months after her admission Angel, who would now intermittently squeeze with her left hand, wiggle her left thumb and wiggle her toes to command, was discharged to a coma stimulation program at an acute care rehabilitation facility. Her transfer was an incredible feat to all who witnessed her turbulent hospitalization. She was one step closer to going home.
Unfortunately, Angel was re-admitted to the Neuro ICU eight days later with a shunt infection. Her family was obviously distressed by this but felt great support being surrounded by staff that knew Angel and all of them so well. She was aggressively treated and after a six-week stay she returned to rehab.
She remained in rehab for four months and then was discharged home to the care of her family. Presently, she is awake, alert and aware though she does not speak. Her tracheostomy was removed, however she continues to require a feeding tube for her nutritional needs and medications. Facial expressions indicate her emotions, her happiness and her frustration. She requires 24-hour care and assistance with all aspects of her care. Despite the challenges, her family is happy that they still have her and take life one day at a time each day hoping for continued improvement.
As I said at the beginning, caring for Angel was one of the most challenging experiences of my entire life. The ethical and diagnostic concerns were immense as well as coordinating the care of the multiple teams; each with their own nuanced opinion of Angel’s care and treatment. During this time I relied on the support of the incredible group of nurses I work with as well as making the difficult decision to not care for Angel on one shift. This was a difficult decision, and one I discussed with J. I visited with Angel and J. that day and consulted with the nurse caring for her, but I felt I needed this one day to decompress.
There is much to learn from Angel’s story and it has become a teaching case for many members of the healthcare team, including myself. For me it has been therapeutic to tell Angel’s story in a variety of different venues, providing information that might assist others, while providing insight to her team. Writing a narrative enables us to reflect on our experience and hopefully improve our nursing practice in the future.
This experience has allowed me to reflect on my values, my professional role and my role in society. It has stimulated growth within me as a nurse, mother, sister, daughter and friend. Even though we deal with crisis on a daily basis as nurses, we are distanced from it, not in a way that prevents compassionate care but in a way for us to objectively understand what is happening and what is needed. This time it was difficult to distance myself. I do not take things for granted. This has reinforced my philosophy on life and how precious it is. Though this was a difficult experience, I have never regretted the decision to become a nurse. I can honestly say that two days are never alike. I can still say that I love what I do even after 22 years, so here’s to another twenty!