As nurses, it's our job to make patients better, to improve their lives in some way. For acute care nurses, the goal is to help patients recover from an illness, surgery, or accident. Rehab nurses help patients reach their highest level of functioning. Community health nurses promote wellness and primary prevention. Hospice nurses help a patient die with the most comfort and dignity possible.
As PICU nurses, our job is to fix children. Pediatrics is arguably the most diverse field of nursing, and we see a huge variety or illnesses, injuries and ailments. I'm very pleased to say that the great majority of children go home well. Kids are extremely resilient. A two year old who aspirated his scrambled eggs can be on ECMO one day and smiling and playing only three days later. I've seen kids overcome insurmountable odds on the road to recovery. I've seen the smiles from ecstatic parents, felt their grateful hugs, read their heartfelt thank-you notes. These memories make it especially hard when there is a child so sick we know they won't be going home.
It doesn't help that our unit has recently had several children with chronic conditions and hopeless prognoses: A few progressive genetic disorders, a fatal surgical complication, a routine procedure that ended in brain death. As PICU nurses, these are our least favorite patients. The ones that we cannot fix. The ones we cannot send home better, or cannot send home at all. These cases are hopeless from the beginning, but we run tests and do research and try new treatments until the question of their care changes from 'What can we do?' to 'What should we do?'
Such is the case with the child who weighs heavily on my mind. A little boy just over a year old, the victim of a serious genetic defect who has already outlived his prognosis by several months. He is cherished by his parents. Though his face and body are severely malformed, his mother looks at him like there has never been a more perfect child. She wants desperately to keep her son with her, but he is nearing the end. A string of recent hospitalizations have left his body exhausted and unable to recover from this most recent respiratory infection. He won't leave the hospital. It takes nearly a week and several family meetings to convince the parents it's time to let him go. In that time, the child has nearly died more than once. A 'Full Code' order required that we compress, push medications, even insert an IO, and left the nurses frustrated and questioning the ethics of our work. It's heart-wrenching for us to process. This child has spent months with us over the past year and we have grown to love him. While we hate to let him go, we hate the thought of hurting him even more. We have reached the 'Can' versus 'Should' moment.
After several family meetings, a DNR is signed. The child is placed in the mother's arms. Family is called in to say goodbye. This time, when the child's heart rate and saturations begins to drop, the scene is different. The nurse doesn't press the code button and sound the alarm. She doesn't place the child on a back board, initiate compressions, push epinephrine or begin bagging. Instead, she holds the hand of the crying mother, she silences the alarms, disconnects the child from the monitor and steps out of the room to give the family privacy. In the eyes of an ICU nurse, she is does nothing.
It's the hardest nothing she will ever do.
The parent's see the difference now. Instead of facing their child's death with fear and anxiety, they sense the peace in his body. He is exactly where he should be- being cuddled by his mother and kissed by his father. His last moments are free from pain and full of security and love.
The family spends as much time as they want holding the child, saying goodbye. When they are ready, the nurse places the child in the crib, removes his lines and tubes, washes his tiny body, makes handprints and footprints in ink and cuts a lock of hair as a keepsake. One by one, the family files out of the room. The mother is the last to leave. She turns back for one last look at her son before waddling out the door. She waddles because this mom is also 36 weeks pregnant.
In a couple of weeks she will return to this hospital, to the Labor and Delivery unit, and she will deliver another baby boy. The nurses in the newborn nursery will assess her new son and deliver the news that the baby is perfectly healthy. There will be no five month stay in the NICU. No barrage of tests and procedures. No hopeless prognosis. This baby will not come home with a trach and a shunt and a feeding tube. His mother and father will take him home after two days and he will thrive. A perfectly healthy baby boy who, by the grace of God, his parents will never have to bury.
Staff line up at the door to see the family out. There are tears in the eyes of the family, the nurses, even our attending physician. We offer condolences and encouragement: "Take care of yourself." "Get some rest." One nurse hugs the mother and softly whispers, "You did the right thing" and the hug gets a little tighter.
The mother saves her final hug for her son's nurse. "Thank you," she says, "for everything."
But we know what she really means is, thank you for nothing.
