(Editor’s Note: I will preface this as I did the last post: if death and mourning are not things you want to confront, don’t read what follows. Caregivers will likely find it more useful than patients. I will also say this is not the piece I planned to write this morning. But the memories of Jane in her second crisis refused to leave me alone until I set them down here. Whether they will now let me be or not remains to be seen.)

Breathe with me…

Five years ago Sunday I sat with Jane in her hospital room. She was in the midst of her second post-operative carcinoid crisis–though I did not know it at the time. My normal habit was to meet with her doctors as they did rounds outside her room. But there was something wrong with Jane’s breathing and I didn’t want to leave her.

“They told me you had a fighting chance…”

“Breathe with me and stay with me,” I chanted over and over again as I held her hand. The doctors moved down the hall to the next patient.

Something isn’t right

Six days earlier, during Jane’s first crisis, one of her nurses said to me I was only allowed to panic if she did–and that since she wouldn’t panic, I wouldn’t either. So when there was a catch in Jane’s breathing now, my voice was calm as I called to the doctors and nurses from her bedside, “We need some help. Something isn’t right here.”

I didn’t want to leave her.

The room was filled with people in an instant. They moved me behind a screen so they could work. That’s when my mind came unglued. But I fought it off. I knew I needed a clear head.

The grays in DNR

Jane had a DNR and we both thought that was a pretty black and white thing. But when the came through the screen I was immediately confronted with how many shades of gray exist between life and death.

 “We need some help.”

“We know she has a DNR,” he told me. “But we think we know what is going on right now and we think we can fix it. But we have to intubate to buy the time we need to do that. If we’re wrong, we can take the tube out and let her go the way she wants to then.” Simplicity died in those three sentences.

The decision I made

I come back to that moment over and over again. Knowing what I know now, I should have let her go. But I didn’t know any of that. I knew her doctor and knew we both trusted him. I knew Jane and I both believed in the concept of a fighting chance. That seemed to be what I was looking at.

Simplicity died in those three sentences.

I told them to her. I told them to do what they needed to do. I told them if it didn’t work, we’d take the tube out and let her go.

Uncharted waters

Five years ago yesterday morning, Jane was still in a coma. Her breathing and blood pressure were stable. There was an octreotide drip in her arm slowly rolling back the over-supply of serotonin that had generated her collapse. I held her hand and talked to her, not sure she could hear or comprehend any of what I was saying.

I told them to intubate her.

At 10 a.m., I met with her doctors, the nurse on duty when Jane had crashed the day before, and a social worker. We talked about what they thought was going on, about who Jane was and what she would want. The told me they were in uncharted waters in some respects.

What would Jane do?

I thought about Jane, the scientist, as I listened to them talk. I thought about Jane, the compassionate human being, as I listened to them talk. And I thought about Jane, the person, as they talked.

…Jane was still in a coma.

The scientist would want to learn all that she could–help the doctors learn what they could. The compassionate human would want them to learn all they could so the next patient would have an easier time of it. The person would want her dignity.

The backdrop

That dignity had been sorely tried throughout the previous weekend. She had had multiple massive diarrhea episodes that overflowed the bed pan and left her soiled and humiliated. I had been out getting something to eat when the first hit. They would not let me into the ICU until it was cleaned up.

The person would want her dignity.

By the end of the weekend, I was helping change her night-clothes and bedding, holding her on her side as the nurse cleaned and salved her bottom. I remember thinking at one point that I was changing her using the some of the same techniques and dispassion I’d used when I changed the diapers on my younger siblings as a child.

ICU psychosis

The thought made me shudder. I hurt for her every time but carefully kept it out of my voice, face, and manner. I knew where I needed to be–where Jane needed me to be–and knew I could only stay and do those kinds of things as long as I stayed professional in my actions.

That dignity had been sorely tried…

Somewhere in there, Jane lost her mind. There is a thing called ICU psychosis. You can read about it–but reading it and seeing it are two different things. Jane told me the doctors and nurses were trying to kill her, lied to them about how often she was doing her physical therapy–and at times seemed to suspect I was in league with them.

Balancing act

I still don’t know how to balance the things that went through my mind that Tuesday morning. I told the doctors, nurses and social workers about Jane’s vow to be the first person to beat this form of cancer–and my vow to do all I could to help her do that. I forced my emotions down and tried to be logical–to look at the evidence I had and make a decision based on that.

The thought made me shudder.

But there was the voice of the scared little boy in there screaming over and over and over, “Don’t let her die, don’t let her die, don’t let her die…” The voice of reason agreed with the little boy–at least for a few more hours. The doctors and nurses were seeing signs that what they were doing was working. For now, the fighting chance remained–and I would not deny her that chance.

The bedside

Only those who have sat at the bedside of a loved one in a coma understand what those hours are like. There is so little you can do: you hold their hand, you talk to them, you read to them. Periodically, a nurse, doctor, or therapist comes in and you try to stay out of the way while they do what they do. They take blood, listen to the heartbeat or breathing, change a medication bag…

I forced my emotions down…

You know they are doing those things–that sometimes they move you from one side of the bed to the other–but you are aware of nothing but the person on the bed, their unresponsive hand in yours, the steady pulse of their breathing. Sometimes they send you out to get something to eat or to take a walk–but the whole time you are gone your heart and mind never really leave the sickroom.

Waking up

Jane woke up early that evening. She was immediately angry at me because of the tube going down her throat. “Stop,” I said. “They told me you had a fighting chance–and I gave it to you.” She relaxed then and I took her hand. Neither us knew how hard the next 36 hours were going to be, nor how hard the next few weeks would be.

There is so little you can do…

For the next few hours, though, it was peaceful.