Regarding July 5-6, 2001

After Dr. Mims met with us Thursday morning to say that there was no hope we knew that we were in a period of waiting. At least 50% of the barbiturates they had given Jeremy had to pass from his system before they could perform the tests required by Texas law in order to declare brain death. How long would that take? We originally thought it might be as soon as late Thursday evening but that proved incorrect. So there were many, many long hours ahead of us. We sat with him, talked on the phone, greeted visitors, talked to the LifeGift Organ Donation folks, asked questions of the ICU nurses. Time stood still.

Eden's arrival was a tremendous help. He's a paramedic, y'know, with a specialty in transporting critically ill patients, so he knew what all the machines and read outs and drugs and tubes were about. All the beeps and boops didn't bother me much - I knew they had meaning, I knew the nurses were keeping track, I knew that if I needed to be consulted on anything I would be - but for Becky and Ron and the others it was more than a little nerve-wracking. Eden was amazingly good at explaining what was going on, a really big relief for everyone.

Ditto, nobody knows how to work the system better. Before we knew it we had two barcaloungers in ICU4 (Jeremy's room), and he'd rearranged the furniture so that we all fit better.

And then there were all the little graces. "I just wish I could hug him," I told Eden at one point. I was afraid of jostling all the tubes and stuff. "If you want to hug him, just do it," he replied. "Hell, get in bed with him if you want. It won't hurt anything." I needed to hear that so much.

He took over so many tasks. Talking to the LifeGift folks, figuring out what to do about a mortuary (Jeremy's body was eventually cremated), determining who needed to do what (we'd never gotten around to doing wills and powers of attorney, so Jeremy's parents would have to sign the official documents, but I could witness them and did.)

Eventually it became clear that certain things were going to be insanely hard. Harvesting the organs was something that would need to occur immediately after he was disconnected from life support, and a lot of prep work would need to occur between the time he was declared legally brain dead and life support was actually terminated. Prep work that would need to occur without us present.

As Eden noted, we stayed at the hospital all night, dozing in the barcaloungers, checking in with everyone now and then to let them know that there was no point in showing up until morning sometime. Eventually everyone returned about breakfast time.

At 10:30 staff from Radiology showed up with a portable, very expensive nuclear imaging device. The barbiturates in Jeremy's system had barely diminished, his body wasn't dealing terribly well with life support (significant fluctuations in body temperature, pulse, etc.) The nuclear imaging device would allow the doctors to determine whether any blood flow was occurring in the brain, regardless of the level of barbiturates in his system.

We knew that in a couple of hours the ICU attending physician would have the results, have an opportunity to review them with Dr. Mims and the radiologists, and then would be ready to make an official pronouncement.

About 11 a.m., I asked everyone there to join us in Jeremy's room so that we could have a heart circle. I'm guessing it was the first ever Mormon Family Prayer / Radical Faerie Heart Circle / Presbyterian Fellowship Group to be convened. The dozen or so of us there at the time - me, Ron, Becky, Jocelin, Larry, Melissa, David, Emily, Steve, Eden, Thom, Patrick, and I'm not sure who else - held hands while Eden cast the circle. And then we did what one does in heart circles, we spoke what was on our hearts. I told them all how much I loved them, and how much I loved Jeremy, and how I knew that he was, always had been, and always would be right there in the heart of each of us. And that someday, not nearly soon enough, I'd hold him in my arms again.

How do the ICU folks do it? There we were, a dozen of us, crowded around one bed, holding hands and sobbing. I can't imagine it's an infrequent occurrence on St. Luke's 7th Floor, South.

Then more waiting.

The ICU attending physician, whose name I never quite figured out, came in around 12:30 to tell us what we already pretty much knew, that the test revealed that there was no blood flow to Jeremy's brain tissue, that he was, in fact, legally brain dead.

We told the ICU staff and the physicians that we would want to spend some time with Jeremy before passing the baton to the LifeGift folks. They told us to take all the time we needed. Which turned out to be a little longer than anticipated, mostly because there were a few preliminary procedures that needed to be done right then.

We went in to be with him in small groups. Melissa and Jocelin, his sisters, went in together first. Then Larry, Jocelin's husband, and Makenzie, their four-year-old daughter, and Emily, who'd been serving as Makenzie's de facto babysitter. I went in with Thom and Patrick.

Steve decided that he wanted to leave a braided strand of his hair for Jeremy. Eden found a bag for it, Thom (I think) did the braiding. Then I went in with Calvin and Steve. Ron and Becky went in together, then Eden by himself.

I'd told folks that I wanted to go in last with David and Emily, and I told David and Emily that I would need a couple of minutes alone with him.

What did we say? What did we do?

I can't recall.

At last it was just me.

Sometimes you have to make up rituals on the spot.

I kissed his ears, I kissed his eyes, I kissed his mouth.

I kissed his nipples, I kissed his fingers, I kissed his toes.

And, yes, I pulled back the sheet and the blanket and I kissed that part of him, too. How could I not?

Then I took the scissors we'd use to cut a strand of Steve's hair and used them to cut a lock of Jeremy's.

I told him goodbye.

I walked out and pulled the curtain behind me, leaving my husband, the other half of my life, that person with whom I'd spent at least half of my waking life over the previous seven years, there in ICU4, his heart still beating, the ventilator still pumping his lungs.

That was the last time I ever saw him in the flesh.

Then we went home.



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