Good night, my warrior princess

I am not much in the mood for this.

One year ago today was the last time Jane was in good shape during the daylight hours. She had started physical therapy therapy again the day before and had her sister and two friends come up from Fall River to see her. She had also begun to learn to talk with her tracheostomy.

Today we had another physical therapy session. But she was frustrated and angry at the pace, tired of being trapped in that hospital room in that hospital bed, and weary with the embarrassment of the frequent diarrhea. She asked me to carry her to the bathroom that night, but I had to tell her I couldn’t because of the feeding tube and the wires that monitored her vitals.

Later, she told me she wanted to go home. She asked me to get the car and sneak her out of the hospital. I had to tell her she wasn’t yet strong enough for that–but that in a couple of weeks they were sure she would be in rehab and that by February, she would be home and able to get up and down the stairs on her own.

I tried to get her to sleep, but she couldn’t. The nurse told me I needed to get some sleep–and that if I slept she was sure Jane would, too. I woke up several times during the night–Jane was wide-awake every time. And that worried me.

In the morning I waited for rounds, then went to get breakfast. I didn’t like eating in front of her, but she made clear she wanted me there that morning. After I ate, we got her out of bed and we watched a Frasier rerun. As it ended, Jane started to shake a little–and the nurse came in and asked her if she was tired. Jane nodded her head.

“Do you want us to put you back in bed so you can take a little nap?”

Again Jane nodded.

We put her in bed and she soon fell asleep. I sat next to the bed and held her hand while she slept and I tried to read a little bit. I remember being thankful that she was finally sleeping. I thought about Christmas and wondered what I should get her. We had been too busy all fall to do much shopping or thinking about Christmas. The house was still decked out for fall. Her on the mend was all I wanted.

About an hour later, the nurse came in. “I’m getting a strange blood pressure reading,” she said. “I think the line is faulty again.” We had had problems from the start getting blood pressure readings, even with a pediatric cuff. And if Jane moved at all–and sometimes even if she didn’t–the sensor would stop working.

She took the blood pressure manually–then took it again. Jane slept through it, as she often had before.

In a little while one of the doctors came in. By now it was clear something was not right.

Just before noon, Jen, Jane’s oncologist came in. Jane woke up when Jen started to talk. “All we can do now is make you comfortable.” Jane went back to sleep. Neither Jen nor I could tell how much of what she had said Jane had understood.

Jen had to see patients that afternoon. “My body will be there,” she said, “But my heart will be here.”

Max, the intensivist, came in a little later. He repeated what Jen had said–that we were out of options and that all we could do was make her comfortable–and let her go the way she had said she wanted.

“But if she wakes up again, you have to make sure she knows what is happening,” he said.

Just before 6 p.m. she woke up again.

I told her where things stood. We cried. We said good-bye. At 6:05 she drifted off again. I kissed her on the forehead.

“Good night my warrior princess,” I whispered to her.

Then I took her hand and steeled myself for what lay ahead.

I talked to her and read to her and shared stories about her with her friends and her nurses and her doctors.

Just before 8 p.m. the next night, she took one last breath and let it out. Her heart stopped–and she was gone.

I took her wedding ring off her finger as she had told me to. I looked at the ring on my finger. She had told me to take it off if she died.

I couldn’t do it.

I thought I would take it off after the funeral. I thought I would take it off on our anniversary.

I couldn’t do it.

Just before 8 p.m. on Saturday…


Posted by walking with jane on December 8, 2011

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