I’ll never forget the night that a four-year-old girl well known to our hospital was transferred to the PICU on one of my call nights. She’d practically lived in the hospital or so I was told, as this was the first time that I’d ever met her. Her past medical history consisted of short gut syndrome and multiple line infections with zero access. She was transferred for respiratory distress and positive blood cultures.
She was cute, with long dark hair, cushingoid cheeks and a voice that sounded straight out of a cartoon voiceover. When she arrived, I noticed that she looked OK–not spectacular–on a little room air.
She was working a bit to breath but overall seemed comfortable, and she was able to tell her parents and nurses to position her just so and turn the TV to her favorite channel. She was placed on appropriate antibiotics, her labs were sent and she was “tucked in."
I discussed with her parents the severity of the situation: She had bacteremia, no way to obtain central-venous access and was somewhat immunocompromised with her history of steroid use. We were concerned about endocarditis and the potential for other organ involvement.
The parents smiled and said they’d been through these “near death” experiences before and she’d always pulled through. They wanted to head home to care for their other children. I explained that it would be nice to at least have one parent there because I felt her condition was critical. But they were convinced they could be easily reached in the event of an emergency.
That should have been my cue. Throughout the evening, she became increasingly tachypneic and agitated, requiring more respiratory support. I stopped by her room at 10 p.m. for the umpteenth time that evening, and she was crying.
Her nurse was busy trying to get all of her medications and fluids administered. I asked why she was crying, and the nurse explained that she wanted her parents, wanted to watch TV and wanted to be read to. I don’t know what made me stay, but something in her demeanor–she was almost frenzied, and frightened–made me stop my usual rounds and sit at her bedside.
I held her hand and asked her which book she would like me to read. She pointed to one and smiled; I smiled back and began reading. My voice seemed to soothe her, but she would periodically sit up and cry, saying “please don’t leave me.” I told her that I wasn’t going anywhere, squeezed her chubby little hand and continued to read until she’d relax again. For the next two hours or so, I stayed by her side; leaving to answer pages briefly in the anteroom and returning quickly to pick up where I’d left off.
She progressively began working even harder to breathe, and I notified the PICU fellow that I intended to start positive pressure ventilation. I feared she was taking a turn for the worse by the look in her eyes. I remember thinking, “Does she know something we don’t?” Shortly thereafter, attempts at positive pressure ventilation failed and she was intubated. She soon became hypotensive and was started on pressors through what few lines we had.
Throughout the next morning, we coded this young girl–who had already been through more than any child should have to endure for 10 lifetimes–for what seemed like hours. She was eventually pronounced with her parents at the bedside observing our heroic attempts, tears running down their faces. Only nine hours before, I had been sitting by her bed reading her what should have been a bedtime story.
With so many changes in medical care and all the stress we have to boost productivity and zero in on the bottom line, we have less and less time to establish real connections with patients. How often are we there when they need us for the things that matter most, especially during their last moments in this world?
After a long call night and an unfortunate death, I headed home and cried. I remember thinking at the time that I was both sad and relieved.
I was crying not only for the loss of a spirited, adorable little girl who fought tooth and nail to make it this far, but also tears of relief. Relief that I had done the right thing. That I didn’t let my census or my routine make me walk away from the opportunity to make a difference in this girl’s life. The sound of my voice reading to her was likely the last conscious experience this young girl had–the squeeze of a hand, those comforting words, the knowledge that someone near her cared. That night, she was the only bottom line that mattered to me, and for that I am ever so grateful.