Saturday, November 19, 2005

96 hours

I saw a posting on my discussion forums from a previous student; she was talking about her experiences working in pediatric critical care. I am sure that she does an excellent job; she was a very competent student.

I am still recovering from my pediatric critical care experience. Here's a story that is stuck in my mind, despite it happening nearly ten years ago.

***

Transference is an old Freudian term that refers to the unconscious redirection of feelings. I didn't know Mandy for very long, but I felt that I loved her the moment that I walked into her room. This little girl was just six years old, beautiful and blonde - she could have been my daughter. So when I saw her I felt love for her.

When I walked into Mandy's room I also felt an immediate sense of deep and profound sadness. She was lying still in the bed, eyes defocused toward the ceiling, and not responding to anything. In a corner of the room I saw a man who I imagined was her father. His eyes were just as distant as her eyes were and I nodded quietly to him, smiled awkwardly, and then began reading her chart.

Reading a medical chart of a child who is in an intensive care unit is like reading a horror novel - except that the reminder of reality is right in front of you as you read. From the chart I learned that she had just been admitted the previous evening and that she had "severe encephalopathy secondary to warm water immersion and anoxia." In simple terms, she was in the bathtub, unsupervised, and she somehow slipped underneath the water. Her mother, with whom she lived (as the parents were divorced) had been leaving her alone to take a bath for at least a year. Mandy was growing up, was becoming independent, and didn't seem to require the same kind of intense supervision that most people agree younger children require. So, it did not seem negligent to the mother to leave her on her own for taking a bath. The mother was a good parent and she loved Mandy with all her heart. She just never thought that an accident could happen.

That is the problem, though. No one can ever anticipate when something bad will happen. It is impossible to say what happened to Mandy in the tub. Perhaps she hit her head and slipped. Maybe she was playing and trying to hold her breath under water. But at some point the mom noticed that Mandy was taking a long time in the tub, and to this day I can't imagine the terror she experienced when she found her child face up and underwater in the bathtub. Emergency personnel were called and Mandy was resuscitated - and now she was in the pediatric ICU.

The chart indicated that an MRI was completed which is a test that provides a detailed picture of her brain. Mandy had little punctate lesions all throughout her brain, at every level. Clinically, she was in deep coma, unresponsive to even painful stimuli, and given the severity of the damage it was not likely that she would be able to recover.

The doctors wanted therapies to provide comfort care including proper positioning and range of motion. Also, not knowing what the decisions of the parents would be regarding further resuscitation orders they wanted her to be treated aggressively to prevent muscle contractures. This may seem like a small issue when a child is so acutely ill in other respects, but the ICU doctors were good in that they had developed long term vision and they knew that future problems would occur if proper preventative care was not provided from the outset.

The brain works as a large command and control center that not only coordinates movement and speech and thought, but it also keeps all kinds of ‘primitive’ reflexes under control. Take away the ‘higher’ brain functions and you will find ‘primitive’ reflexes strong at work. The primitive reflexes in Mandy’s brain were causing her body to go stiff and straight in her arms, legs, and spine; the medical term for this is decerebrate positioning. This is the kind of positioning that I was to work against, just in case the parents decided to approve of extraordinary measures to keep Mandy alive, such as a tracheostomy, a ventilator for breathing, and a feeding tube.

Underneath the neatly folded blankets I couldn’t see Mandy’s body at all. I just saw her beautiful little face, her hair brushed neatly and falling around her head and shoulders. I introduced myself to the man who did identify himself as her father. I don’t know if he understood what I told him or if he even was able to pay attention to anything I said. His eyes never betrayed that he even recognized my presence. Underneath the blankets I found direct evidence of what was described in the medical chart: Mandy was posturing stiffly into extension and it was very difficult to bend and move her limbs. I told her dad that I would be down a couple times a day to try and move and reposition her, and to teach him to do this as well.

Over the next four days I saw Mandy several times a day. I saw her father also; he had the same plaid shirt, jeans, and work boots that he had on the first time that I met him. Mandy’s mom never came to see her – she was so overcome with her own guilt and her own grief over what happened that she had to be hospitalized. When I saw Mandy I would always talk to her as I attempted to move her. On the second day I asked her father if she liked to be sung to, and he said yes, so I would sing her a different song each time I saw her. I remember that she seemed to relax most when I sang Thunder Road, a Bruce Springsteen song.

**
On the second day the father would stand next to me as I tried to make his daughter comfortable. I would massage her stiff muscles, gently try to move her joints, and move her from side to side so that she would be more comfortable. It was such a small intervention, really. Mandy’s brain was devastatingly damaged, and I was massaging her muscles, singing to her, and telling her how pretty she was as I brushed her hair away from her face. This is the futility of Sisyphus. Or the hopelessness of Prometheus. The feeling is just beyond words or comparison.

***
On the third day I was again completing my care of Mandy, but her father didn’t want to come and stand by her. He was sobbing, gently, but asked that I still work with Mandy. “Don’t mind me,” I remember him saying, and I remember fighting back my own tears as I tried to move Mandy’s arms and legs. Although she was just a child and only had the muscles of a child, this does not adequately explain how tight muscles can get when the brain is damaged. On this third day I could not bend Mandy’s elbows or knees at all; her muscles were rippling underneath her skin, contracting powerfully to make her as stiff and unbendable as steel.

Stress can cause your perceptions to alter and can make your thinking unclear. I remember thinking to myself, “If only I could get her arms and legs to bend - ” as if somehow that would make any difference. As I tried to help her relax and tried to get her limbs to bend and tried to make her more comfortable in the bed, she started to cry. Not audibly. She just had tears in her eyes, rolling down her cheeks. Her eyes were still defocused, staring blankly toward heaven, she was just as unresponsive as ever, but that day she cried.

Panicking, and thinking that perhaps I had hurt her, I remember snapping clearly back to my senses. I remember saying to myself, “Dear God, what am I trying to do?” I gently wiped her eyes, sang to her, and just held her hand. “I’m so sorry, Mandy,” I said quietly to her, not even knowing what I was apologizing for.

****
On the fourth day Mandy’s chart said that the parents signed a ‘do not resuscitate order,’ which precluded the doctors from performing any excessive or extraordinary lifesaving procedures. Now they were waiting for her to die.

Her breathing had changed noticeably. The medical term for this is Cheyne-Stokes respirations. She would breathe rapidly for a time, and then stop breathing, and then have another period of rapid and deep breathing. Each time we would wait for her to start breathing again, and I remember feeling my own pulse race in anticipation of her next breath. This cycle repeated for much of the morning of the fourth day.

In the afternoon the staff who cared for Mandy had all gathered, as it was evident that she was dying. We stayed with the father and stayed with Mandy. And we all held each other. As her breathing became even more episodic the nurses took away the monitors and wires. Then, after a period of not breathing, and my own heart pounding in my ears waiting for her next breath, Mandy didn’t breathe again.

1 comment:

Anonymous said...

Hello,
This is my first visit. I am an OT also. I work in school based practice and acute settings PRN.
Thanks for the remembrance of Mandy. This story reminds me of situations in my experience - past and present.
I'll stop in regurlarly!
Julie