Joan Didion - The Year of Magical Thinking

Maybe I didn’t notice that?

My only child?

My unconscious child?

Maybe I didn’t notice when I walked into the ICU that morning that her brain waves were gone? That the monitor above her bed was dark, dead?

This was now being presented as progress but it had not seemed so when I first saw it. I remembered reading in Intensive Care that the ICU nurses at San Francisco General turned off the monitors when a patient was near death, because their experience was that family members would focus on the screens rather than on the dying patient. I wondered if such a determination had been made in this case. Even after I was assured that this was not the case, I found myself averting my eyes from the blank EEG screen. I had grown used to watching her brain waves. It was a way of hearing her talk.

I did not see why, since the equipment was sitting there unused, they could not keep the EEG on.

Just in case.

I had asked.

I do not remember getting an answer. It was a period when I asked many questions that did not get answered. What answers I did get tended to the unsatisfactory, as in, “It’s already on the schedule.”

Everyone in the neuro units got a trach, they had kept saying to me that day. Everyone in the neuro units had muscular weaknesses that rendered the removal of the breathing tube problematic. A trach involved less risk of windpipe damage. A trach involved less risk of pneumonia. Look to your right, look to your left, both sides have trachs. A trach could be done with fentanyl and a muscle relaxant, she would be under anesthesia no more than an hour. A trach would leave no cosmetic effect to speak of, “only a little dimple scar,” “as time goes by maybe no scar at all.”

They kept mentioning this last point, as if the basis for my resistance to the trach was the scar. They were doctors, however freshly minted. I was not. Ergo, any concerns I had must be cosmetic, frivolous.

In fact I had no idea why I so resisted the trach.

I think now that my resistance came from the same fund of superstition from which I had been drawing since John died. If she did not have a trach she could be fine in the morning, ready to eat, talk, go home. If she did not have a trach we could be on a plane by the weekend. Even if they did not want her to fly, I could take her with me to the Beverly Wilshire, we could have our nails done, sit by the pool. If they still did not want her to fly we could drive out to Malibu, spend a few restorative days with Jean Moore.

If she did not have a trach.

This was demented, but so was I.

Through the printed blue cotton curtains that separated the beds I could hear people talking to their functionally absent husbands, fathers, uncles, co-workers. In the bed to Quintana’s right was a man injured in a construction accident. The men who had been on the site at the time of the accident had come to see him. They stood around his bed and tried to explain what had happened. The rig, the cab, the crane, I heard a noise, I called out to Vinny. Each man gave his version. Each version differed slightly from the others. This was understandable, since each witness proceeded from a different point of view, but I recall wanting to intercede, help them coordinate their stories; it had seemed too much conflicting data to lay on someone with a traumatic brain injury.

“Everything’s going along as usual and then all shit breaks loose,” one said.

The injured man made no response, nor could he, since he had a trach.

To Quintana’s left lay a man from Massachusetts who had been in the hospital for several months. He and his wife had been in Los Angeles visiting their children, there had been a fall from a ladder, he had seemed all right. One more perfectly ordinary day. Then he had trouble speaking. Everything’s going along as usual and then all shit breaks loose. Now he had pneumonia. The children came and went. The wife was always there, pleading with him in a low mournful voice. The husband made no response: he too had a trach.

They did the trach for Quintana on the first of April, a Thursday afternoon.

By Friday morning enough of the sedation for the breathing tube had been metabolized out that she could open her eyes and squeeze my hand.

On Saturday I was told that the next day or Monday she would be moved from the ICU into a step-down neuro-observational unit on the seventh floor. The sixth and seventh floors at UCLA were all neuro.

I have no memory of when she was moved but I think it was some days after that.

One afternoon after she had been moved to the step-down unit I ran into the woman from Massachusetts in the Café Med courtyard.

Her husband too had left the ICU, and was moving now to what she called a “subacute rehab facility.” We each knew that “subacute rehab facilities” were what medical insurance carriers and hospital discharge coordinators called nursing homes but this went unmentioned. She had wanted him moved to the eleven-bed acute rehab unit at UCLA Neuropsychiatric but he had not been accepted. That was the phrase she used, “not been accepted.” She was concerned about how she would get to the subacute facility — one of the two with an available bed was near LAX, the other in Chinatown — because she did not drive. The children had jobs, important jobs, they could not always be driving her.

We sat in the sun.

I listened. She asked about my daughter.

I did not want to tell her that my daughter would be moving to the eleven-bed acute rehab unit at Neuropsychiatric.

At some point I noticed that I was trying like a sheepdog to herd the doctors, pointing out edema to one intern, reminding another to obtain a urine culture to check out the blood in the Foley catheter line, insisting on a Doppler ultrasound to see if the reason for the leg pain could be emboli, doggedly repeating — when the ultrasound indicated that she was in fact again throwing clots — that I wanted a specialist on coagulation called in to consult. I wrote down the name of the specialist I wanted. I offered to call him myself. These efforts did not endear me to the young men and women who made up the house staff (“If you want to manage this case I’m signing off,” one finally said) but they made me feel less helpless.

Iremember learning at UCLA the names of many tests and scales. The Kimura Box Test. The Two-Point Discrimination Test. The Glasgow Coma Scale, the Glasgow Outcome Scale. My comprehension of the meaning of these tests and scales remained obscure. I also remember learning, both at UCLA and before, at Beth Israel and Columbia-Presbyterian, the names of many resistant hospital bacteria. At Beth Israel there had been Acinetobacter baumannii, which was resistant to vancomycin. “That’s how you know it’s a hospital infection,” I recall being told by a doctor I asked at Columbia-Presbyterian. “If it’s resistant to vanc it’s hospital. Because vanc only gets used in hospital settings.” At UCLA there had been MRSA, methicillin-resistant Staphylococcus aureus, as opposed to MRSE, methicillin-resistant Staphylococcus epidermidis, which was what they first thought they had cultured and which had seemed to more visibly alarm the staff. “I can’t say why but since you’re pregnant you may want to transfer off,” one therapist advised another during the MRSE scare, glancing at me as if I might not understand. There were many other names of hospital bacteria, but those were the big hitters. Whatever bacteria was shown to be the source of the new fever or urinary tract infection, it would mandate gowns, gloves, masks. It would provoke heavy sighing among the aides who were required to suit up before entering the room to empty a wastebasket. The methicillin-resistant Staphylococcus aureus at UCLA was an infection in the bloodstream, a bacteremia. When I heard this I expressed concern to the doctor who was examining Quintana that an infection in her bloodstream might again lead to sepsis.