2018 was the hardest year of my nursing career thus far. I felt overwhelmed, morally distressed, physically and mentally exhausted. Attempting to work with three kids at home, one of them an infant who didn't like to sleep through the night, made getting to work rested an unattainable goal. And once I walked through the hospital doors what I dealt with was more taxing than any other season I've experienced. In addition to the increased demands of my job, I felt a lack of support from my manager and growing pains as the institution I work for expands.
As healthcare changes and technology advances, medical science can keep almost anyone alive. Whether or not that's the right thing to do is ethically unclear and who has the right to make those decisions on behalf of a child is equally questionable at times. As a bedside nurse it is not my job to be involved in deciding what kind of care we offer to a family. Yet it is my job to stand vigil at said child's bedside for 12 hours whether or not I agree with the decision making process. It's a hard thing to do when the patient is clearly suffering and the treatment isn't a means to an end. There is now literature being published to support the truth that we keep children alive in order to treat the parents and not the child. For a period of time I think that's appropriate. Mamas and their babies in some of these cases have only been physically two and not one for mere weeks. Though at some point what is best for the child should be honored. Ninety five percent of the time parents recognize this and make the heartbreaking decision to give their child angel wings. I respect and admire these families beyond words for their strength and perseverance during an unthinkably difficult time.
There's also a small percent that insist on continuing invasive management despite advice from the medical team that it's unlikely to be successful in the long term. Last year we had around five babies that were in our unit for over a year. They are confined within the four walls of their hospital room with machines sustaining life. While we care for these babies their parents often treat us poorly and use the nursing staff as a scapegoat for their frustration regarding their child's illness and prolonged ICU stay. We are verbally abused and there are no repercussions for this type of behavior. The hospital feels strongly about customer service to the point of catering to parents dysfunction.
The families that have no real coping skills are incredibly difficult to work with. Yet, I know in my heart of hearts that they are doing the best they can. I don't always agree with their decisions but I feel for them because I know their lives haven't been easy, and they are amidst a heartbreaking crisis. Developing strong interpersonal skills is privilege that not everyone has access to. And everyone deserves grace upon grace upon grace.
There was a situation that I was heavily involved in which we kept a patient alive for an extremely extended period of time and in this case I felt it was warranted. It was success, followed by setback, followed by a success, that made keeping the course the right thing to do. I adored this family and the young man was incredibly sweet. He was on two pieces of invasive equipment that require speciality training. I am one of about six nurse trained on both pieces of equipment, therefore I cared for him almost every single shift for six months straight. I enjoy continuity but his care was so time intensive that it was an extremely difficult assignment to have. Physically because he was adult sized, mentally because his care required constant critical thinking and emotionally because I was so deeply vested in him and his family. I would walk out of work feeling like I got hit by a truck every shift, so tired I ached in my bones.
Near the end of his life things got really bad and I watched him literally rot away in his bed. Something that happens to adults in ways it doesn't to babies. His chest bone didn't heal after surgery and eventually shattered, leaving a gaping hole in his chest so large that I could see all his internal organs sloshing around when the dressing was off. As we rolled him in bed one day a piece of skin on his back ripped. It was upsetting enough that I felt physically ill. His family was so, so wonderful and given that he was of an age to make medical decisions for himself they let him decide if he was ready to withdrawal care. He wasn't. And as miserable as he was, I understand that nobody wants to die.
So we kept the course, with each passing day harder to get through for everybody-- him, his parents and those caring for him. It was ultimately discovered that a fungal infection had invaded his brain. Seeing the imaging of that was another time that I felt physically ill. It was awful. Having the patient involved in decision making is not something we typically experience in pediatrics and that added another level of moral distress to the picture. We knew that there was no way he could survive the infection and so we had to tell him he was going to die. All he wanted was to go home and we did everything in our power to make that happen, including an entire nursing/medical team willing to transport him off the clock. He never made it in the way he was hoping but I'm confident he ended up in a Home far more beautiful than the one he grew up in.
Over the course of the year, even when I wasn't caring for him I felt like I had an assignment that was equally challenging. One day I had a high school student shadowing me and she asked about the long term prognosis of the baby I was caring for. I told her it was uncertain. The sweet little student was upset so I wanted to tell her about another patient in the unit who had a brighter future.
There wasn't one.
I don't think nursing will be the career that gal chooses. As surgery gets more effective, the babies who do well are out of the unit much quicker than they used to be, so the majority our patients end up being chronic care, which feels like an oxymoron in an ICU. Intensive care was never intended to be chronic. But here we are.
We can cut your native heart out of your chest and put an artificial one in until a solid organ transplant becomes available. We can transfuse twice your circulating volume with blood, crack your chest open at the bedside and cannulate you onto ECMO, a machine that does all the work for you heart and lungs. If you're listed for a heart transplant and your kidneys fail, requiring continuous dialysis, we can list you for a second donor organ.
There is SO much we can do. And it's so hard to know when to stop.
The day after the patient above passed away, those of us that knew him well gathered in the training room and wept. With nurses, doctors and spiritual care we shared stories about how special the family had been to us and acknowledged what a difficult situation it was to endure. It was healing to tell each other what a good job we do and have the doctor there acknowledge the unique and challenging role nurses play. That day was the first in a string of things that happened to reassure me that despite the challenges the CICU continues to be where I'm called to be.
Shorty thereafter, my manger presented me with my "10 year" plaque as recognition for my dedication to the organization. I was closer to my 11 year anni when I got it, but the timing felt significant. I took a picture of myself holding it and felt proud of all the hope and heartache I have endured within these walls.
Next, I took care of a young teen who had a 70 minute cardiac arrest. I got her out of bed three days later, totally neurological intact. As a team we work hard to function well in a code and provide the highest quality CPR possible. 70 minutes without a beating heart and resistation that provided adequate cerebral blood flow is an amazing accomplishment. Being a part of that makes me hopeful.
Then there was a baby from Gig Harbor who was transferred to Children's and admitted to the NICU in septic shock immediately following birth. Ty went High School with her mom and so I started following their story. I wasn't directly involved in her care since she was in our sister ICU, but the care she was receiving is paralleled in our unit on the regular. Based on medical science alone, I predicted that she would likely pass away and if she didn't she would have serious neurological deficits.
But she didn't.
In what can only be explained as a miracle that sweet girl defied the odds at every turn and made a complete recovery. Reading regular updates from the parents was so healing for me. They talked about how loved they felt by the nurses and what a gift it was for them being treated at Children's. They had no disillusions about the severity of their baby's illness but were steadfast in their faith and simultaneous trust in the medical team. One thing they shared on their blog that really stuck with me was that a doctor told them "Children's doesn't perform miracles, we create space for them to happen." It was not the first miracle I've witnessed and I'm sure it won't be the last. But sometimes there is more clarity when you're on the outside looking in. It was a beautiful reminder of why I wake up at 4:30 am and drive past multiple other hospitals to be at this job, week after week.
I was off for two weeks around Christmas and I went back to work New Year's Eve and New Year's Day. I had a lovely few shifts caring for a baby whose likelihood of thriving in childhood was quite high. Both days were beautiful outside and we have large windows with amazing views in all the rooms. As the sun majestically rose I felt a sense of peace. And as it set I felt the moral distress of the past year laid to rest with it.
With all that has happened I've reflected quite a bit, and here's what I know.
For everything there is a season and 2018 was a stormy one professionally. My job is simultaneously hard and beautiful. There are situations that feel impossible to deal with. And there are miracles. God never promised us a life without pain but assured us that He will be there to love, guide and grow us in our heartache. Even here is the dreary PNW, no matter how much it rains- the sun always shines again.
The situations I'm exposed to make me grateful every single day. I have everything I could ever need and know how quickly that could change. If anything happened to my children it would shatter my heart into a million pieces. I also know I'd be okay. I have an incredibly strong support system and a faith that is bigger than any one circumstance.
The babies that grew in my womb are the most sacred gift I've ever been given. And yet I never want confine my role as a mama to just the three of them. I know that it is so much more than that. I step in and care for critically ill babies in a way their moms aren't able to. I stand beside parents in the most devastating time of their life and let my heart celebrate or break with them. We were never meant to parent in isolation and supporting families in this way keeps my heart tender and my worldview wide.
I know there is a lot I can't control or begin to understand. As I attempt to cope with the changing face of healthcare, the One who weaves hope, light and love into the darkest corners of the world has reassured me that I'm exactly where I need to be. Supporting the most vulnerable among us in a tangible way has always spoke to my heart. And I know that matters.
