Insisting Upon Substance

There is a phrase that starts off all too many hand-off nursing reports in our pediatric intensive care unit. As soon as I hear it, I know the subsequent report is about to add yet another thing to my internal running list of dreaded possibilities of what could, without warning, threaten the life I want for my own children on any given day.

“Previously healthy.”

“Juan is a previously healthy 8 year old, a few weeks of nausea, vomiting, ataxia, right eye deviation. CT scan shows a large posterior fossa mass. Biopsy is scheduled later this week.”

“Christina is a previously healthy 14 year old, 3 days of high fever at home with URI symptoms, came through the ED for increased work of breathing, now intubated for respiratory failure from the flu and is getting an ECMO workup.”

“Amy is a previously healthy 5 year old, went to the bathroom at school and was heard screaming loudly. Found on the bathroom floor by a teacher, MRI shows a ruptured AVM.”

Previously healthy. Children and families just like mine. Last month, last week, just yesterday, they were living carefree, looking forward to tomorrow while in the same breath taking all tomorrows for granted. We spend all day thinking about the life we want when we are healthy. My kids want toys and cake and a bouncy house for their birthdays, and in February they keep asking if Christmas is coming up soon. Most days I simply want happiness and longevity for them, and sometimes I quietly, guiltily wish for space and freedom from them. Then something on that dreaded list strikes, and we find ourselves spending all day thinking about what we really want in life. When happiness and longevity become severely threatened, we’re pushed to consider what, then, might sustain our hearts when we cannot promise cake or bouncy houses or a next Christmas.

David was previously healthy before his freak spinal cord accident left him suddenly quadriplegic and intubated. His movement below his upper torso was gone, but his mind and heart, holding all the shifting of his hopes and griefs, were so very intact. Though stunned, his parents tackled the raw, hard conversations about his prognosis and potential for recovery very early on in his PICU stay. Embedded in those conversations was the key question, “What do we think he wants, given the realities of his condition?” The next question that followed was intimately and inevitably coupled with the first: “How are we as a team going to help him get there?”

In his initial days of oral intubation, David was extremely agitated and tearful when woken out of light sedation for nursing care or assessments. He didn’t want the breathing tube, and made that known with violent thrashing of his neck from side to side. He didn’t want this injury, with its power over his stubbornly motionless body, and he made that known with his tears. His thrashing was unsafe and his agitation was painful for everyone to witness in those early days; thus, the decision was made to sedate him more heavily until the team established a clear plan of care with his parents.

We all speculated about his potential for recovery. We grieved the loss of the life he had, and the potential loss of the future he had once envisioned for himself. Sedation seemed like a gift I could give for such grief – both his and mine. I felt relieved by the ability to administer sedatives, the ability to help him stop thinking about all the things he didn’t want in his life – this injury, this breathing tube, this dependency, this great sadness. I also felt guilt about my relief. It felt easier to give sedation than to give hope in those early days of his stay.

But within a few days following his admission, his parents told the healthcare team they wanted to lift sedation to explain to him what a tracheostomy tube was and how it would play a key role in his long road of recovery, his long road to a new normal in his life. They knew it was time to move from dwelling on the previously healthy life they wanted, to consider what their desires and goals were for their life now. As David began to wake out of his sedation, his eyes were deeply expressive as the team explained the tracheostomy tube to him. His parents gently interjected throughout the conversation, “We are always here with you, son. We love you. We will go through this with you.” Though tearful, he was notably less agitated. He was ready to take the next step forward.

As David’s slow recovery progressed, he was able to speak with increasing clarity around his trach, and as his voice grew, so did his smile. Small but significant bits of movement were returning to his hands and feet. The gifts I had to offer him shifted from the temporary stopgaps of sedation to something more substantial in my presence and my encouragement. But I realized quickly when I stepped into his hospital room that I was only reflecting back the gifts of hope, perseverance and gratitude that he and his parents had first given to me.

Previously healthy.

There had once been a life David and his parents had wanted, one much like the life I want for my children. Though it had been profoundly disrupted and overturned without their consent, they insisted upon something of deep, joyful, enduring substance despite not having all the answers, and they invited me to do the same.

This is what I really want in my life as a nurse and a mother. If a time should come when my children and I find ourselves up against illness that we never wanted in our lives, I want us to be a family that insists upon deep, joyful, enduring substance regardless of ultimate outcomes. A family of hope, perseverance and gratitude, even in the face of unfathomable circumstances.  I want to be in the care of healthcare professionals who carefully consider when a time for sedation is appropriate, and when the time for brave, honest, empathetic conversation has come. David and his parents taught me that this is, in fact, possible.

Previously healthy. Always hopeful – then, now, forever.

 

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