It's been one of those months in the pediatric ICU where shit just really sucks: end-of-the-summer scoliosis repairs, holiday death, and dismemberment (think transplant recipients), all on top of the normal influx of just-plain-old-sick kids.
Normally, it's OK. I manage.
But this week has just really taken the fight out of me. Watching a family slowly let go of their toddler has broken my heart over and over again from 7 pm to 7 am every night since Thursday.
Taking care of any dying patient is difficult. I've run the gamut from a 3 day old to a 90 year old with every age in between. I've seen new mothers pass away and leave behind shocked husbands and fussy babies, and I’ve watched old men with no one left slip away with only me in the room.
But there is nothing (and I mean nothing) worse than watching a parent lose a child. There is no sense in it -- no rhyme or reason. There are certainly no words that can begin to comfort a mother who has watched the infant she so recently held safely in her belly first turn jaundiced and unrecognizable, and then -- gone.
As a child goes from sick to dying, things start to change for both the nurses and the families. Parents or health care proxies can choose to sign a Do Not Resuscitate (DNR) order, which means in the event of cardiac arrest, CPR or Advanced Life Support will not be initiated. With the execution of a DNR, the hospital staff begins a shift from aggressive treatment to ensuring dignity in the final days.
It begins subtly. I close the curtain and speak softly, where once I left the curtain open to keep my eyes on the patient and on the monitor at all times, yelling out whatever I needed to passing coworkers. I make it a point to keep my patient looking and smelling as much like a baby as possible. I dress him in his PJs despite how difficult it will be for me to access his IVs and wound dressings. I comb his hair into a soft baby faux-hawk because I know his mother likes it like that. I smear diaper cream on his mottled backside, and use liberal amounts of baby powder to cover the smell of blood and other unpleasant fluids.
The biggest change becomes my requests for permission: "Mommy, if it’s OK, I’m going to change his dressing" or "Dad, is it OK if I just scoot in here to change his leads?" No longer am I the know-it-all nurse who puts her tasks first. Now I am the whisperer of consoling words and offers: "Let me know if there’s anything I can do or get for you." I feel the need to be as soft as I can, as if it will take away any of the hardness in their faces.
As the end draws near, the staff pulls back to allow the family time to grieve. I don’t rush in when the alarms go off. We adjust the limits so they don’t go off as often, or if it’s easier for the family, we turn off the bedside monitor and rely only on the central monitor at the nurse’s station to assess the patient’s vital signs. The care becomes more about those around the patient than the patient himself. Family members come in to say their goodbyes and share stories. I offer them water and tissues, feeling utterly useless now that my carefully honed technical skills cannot help.
It's a strange place for an ICU nurse to be. We spend our shifts in controlled chaos: pushing meds, doing CPR, drawing blood, suctioning endotracheal tubes, monitoring ventilator settings. A million tasks that help you feel like you’re accomplishing something, but in situations like this, you grieve, too. You admit to yourself that you can’t save everyone, and it fucking sucks.
But it’s also really beautiful, too.
Even if you aren’t religious, there is something so powerful about seeing a family join together in prayer and truly take comfort from it. I recall a family gathering together and singing hymns as a baby girl slipped away, and while I don’t consider myself spiritual, I was moved. The songs were joyous and their voices were strong even as tears rolled down their faces. They knew their little girl was in a better place, and their faith and convictions allowed them to experience her death from a place of acceptance and love.
You learn so much about yourself and your capacity to be strong and to love deeply and to be there for the people that matter. I have gained so much from this career: perspective, humanity, and the ability to look death in the face and say, "I guess it’s okay."
When my sister miscarried a few years ago, she told me I was the only one who knew what to say. That’s not something you can put on a resume or use in everyday life; but when you do know the words to say to someone facing a devastating loss, it’s a relief, it’s empowering, and it’s a way of helping them validate their grief (and your own). To provide comfort, to lessen the ache, to let people know their child was alive and special and beautiful and will be truly and honestly missed is an important service -- one that I do my best to provide.
When it’s over, I keep my distance. I let the parents spend as much time with him as they need; I offer my condolences and tell them what a joy he was to know. And when they’re not looking, I cry. But then I take a deep breath and remember that this beautiful little life is no longer in pain, no longer suffering or scared, and I am consoled.