Authors

  1. Paradisi, Julianna RN, OCN

Abstract

When a little laughter and play is a matter of life and death.

 

Article Content

Four-year-old Valentina was admitted to the pediatric intensive care unit (PICU) after a cardiac arrest following a routine surgical procedure the previous day. Her father said that just before her heart stopped beating she'd vomited what looked like a quart of blood onto the white sheets of her hospital bed.

  
Figure. Illustration... - Click to enlarge in new windowFigure. Illustration by Barbara Hranilovich

Since then, Valentina hadn't regained consciousness. Her endotracheal tube connected to a ventilator, which did all her breathing for her. She was in a coma, and severe brain damage appeared as shadows on the diagnostic images.

 

A series of tests were performed, and databases searched. Sedation was tapered down, and we looked for purposeful movement. Care conferences were held, all of the specialists consulted. The tests and the specialists agreed: Valentina would never be the same.

 

Her parents signed consents for all of the tests, and waited for the results. Not once was the news good, and their world shrank to the size of their daughter's hospital room.

 

Because Valentina's family didn't want to give up hope, and because suggesting ending life support to the family of a child is one of the hardest things in the world to do, this process took on a life of its own. The unpromising test results led to more consents for additional procedures: a trach replaced the endotracheal tube, and a gastric button provided a new orifice for liquid feedings, eliminating the tubes in her nose and mouth.

 

I could see Valentina's face now. While bathing her motionless body in the hospital bed, I touched the feeding tube marring the surface of her belly, and imagined her father pressing his pursed lips against that previously smooth belly, making farting noises by blowing his warm breath against it, and he and Valentina both laughing.

 

A memory amid this sadness sparkles in my mind, like a shard of broken glass glinting in the sun at the scene of a car crash. We admitted another child into the PICU, a two-year-old named Martha. Her mother brought her to the ED with a broken arm. The ED staff called social services, who took Martha away from her mother. Her mother said Martha fell, but the humerus is almost impossible to break in a typical fall; the bones of the forearm absorb the impact of the fall as you reach out to catch yourself. And the X-ray exam showed that a twisting motion had fractured the pliant bone. A bone survey revealed other untreated fractures, some in her skull.

 

Martha was admitted for treatment of dehydration and malnutrition until she was well enough to be placed in foster care. Small and thin, she didn't fight or protest when an IV needle pierced her arm so she could receive fluids or we could obtain blood for tests. I held Martha during my shifts, sometimes singing or reading stories to her. She didn't cuddle; she sat stiffly in my lap. She only knew neglect and violence; this kind of attention was foreign to her and she didn't know how to respond. Her depression was palpable, and I couldn't reach her.

 

A wide column supported the ceiling outside the door of Martha's room. One shift, while charting, I watched Martha sitting in her crib, staring blankly at who knows what. Then Valentina's father walked in, to spend the evening at his daughter's bedside. The physicians had told the family nothing more could be done for Valentina. She wasn't going to survive. Besides this, Valentina's mother was pregnant and had been admitted to the obstetric unit for premature labor. After work, Valentina's father visited her there before coming to the PICU to sit with his dying daughter.

 

Heading toward his daughter's room, he walked past Martha. He looked at her-she had a cast on one thin arm and an IV in the other.

 

Her eyes flickered, but her expression didn't change. They looked at each other. Suddenly Valentina's father ducked behind the column, out of Martha's view, paused a beat, then popped into sight, saying "peeka-boo!" before vanishing again. Martha stared. He did it again. Martha smiled, and then she laughed-a cute toddler's laugh.

 

Valentina's father smiled. Then he laughed. They played peekaboo for 20 minutes, maybe longer. I don't remember how long, because I was crying. I kept thinking about Humpty Dumpty, how all the king's horses and all the king's men couldn't put him together again, but laughter can ease broken hearts.

 

A few weeks later, Martha became well enough to be discharged to a foster parent. One evening, Valentina's heart stopped for good. Her parents and newborn baby brother were at the bedside to say goodbye.