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Beholding the Returning Light

Sato, Hui-Wen (Alina) MPH, MSN, RN, CCRN

AJN The American Journal of Nursing: November 2019 - Volume 119 - Issue 11 - p 72
doi: 10.1097/01.NAJ.0000605400.60312.c0
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An unknown patient becomes known.

An unknown patient becomes known.

Hui-Wen (Alina) Sato is a pediatric intensive care nurse in Southern California. Her blog can be found at http://heartofnursing.blog. Contact author: hui.sato@gmail.com. Reflections is coordinated by Madeleine Mysko, MA, RN: mmysko@comcast.net. Illustration by Barbara Hranilovich.

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Figure

The first time I met him, it wasn't really him I was meeting. He had already slipped away into some unknown place.

Our rapid response team was called to his room because this previously healthy boy had gone from uttering occasionally confused responses to solely nonsensical sounds, and was increasingly unable to control his own oral secretions. The medical team was working up possible causes for the changes in his neurological status. An infection? An autoimmune disorder? The family was anxious for answers.

His eyes weren't following anyone or anything in the room. Drool dangled from the side of his mouth and he made no effort to clear it up. Our physician assessed the situation and decided to bring him to the ICU for closer monitoring, as the medical team worried he could not safely protect his own airway.

This was the beginning of a nearly five-month stay in our ICU, where he endured numerous medical interventions to address the suspected causes behind his neurological impairment. For months, we simply knew him as this often agitated, sometimes unstable, generally nonverbal, nonpurposeful patient whose actual personhood seemed, if I'm honest, unrecoverable. We didn't even know who we were trying to recover; our lives first intersected with his when he was already too sick to show us who he once was.

His family and girlfriend were ever present, and from them we got glimpses of the person they knew. “He was always really quiet. He's never had health problems before. But when he started nonstop talking, and then began talking nonsense, we knew something was wrong.”

Because I had no knowledge of his personality prior to his illness, and because he was so altered for so long, providing care as his nurse felt routine, mechanical almost. His mind and spirit felt so far gone, I wondered at times if our care had any ability to bring him back in any meaningful way. We tried to always address him by name and talk to him while providing care, but interactions were always one-sided. Nurses gave report to each other every 12 hours, coming and going with his days on our unit. “Today he was more agitated.” “Today he slept the majority of the time.” “You know his history, right? Everyone knows him by now.” But we didn't really know him.

Finally, after months of treatment, small but significant signs of recovery began to emerge. He could breathe without a breathing tube. His agitation had lessened. He seemed at times to obey commands. It was just enough progress to move him out of the ICU back to the med–surg floor.

After a couple of weeks on the med–surg floor, his family brought him down to visit all of us in the ICU who had taken care of him for so long. As his aunt pushed him in his wheelchair and his girlfriend walked alongside, he had a weak but genuine smile, and though he was not yet speaking, he nodded and responded to us in other ways that showed he was very much alive and present. His movements were no longer jerky, tense, resistive. He was relaxed and mellow, like one still waking from a very long nap. Where I saw the most depth of presence was in the long gazes he occasionally held with his girlfriend, who gently held his hand as they moved through the unit. As we surrounded him and marveled at his recovery, he would from time to time simply tune us out, look up at her and hold a gaze of tenderness, gratitude, love. Seeing the returning light and life in his eyes was like witnessing a resurrection.

Nurses' experiences with our patients can parallel that of their families and loved ones. You wonder if you have lost this person for good, and you have to ask: if I have such little sense of what their future may hold, how much do I open my heart up and how hard do I fight for them? What would this person want? Who's to say if our persistence is more for our sake or theirs?

All of those questions seem so straightforward in some cases, so complicated in others. There are some cases, especially in the ICU, when you don't ever get a clear answer about whether all your efforts have actually resulted in something truly good, or just a more subdued, medically controlled version of prolonged suffering.

But seeing this patient, his return, his presence, his enduring love, was a gift. Because some days in health care, you don't really know what hope you are fighting for or for whom. On this day, we saw both with wondrous clarity.

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