Chapter 2: Sea Change

A long hospitalization is a crucible, an experience which burns away all that is unnecessary. What it leaves behind is essential, and luminous.

I can hear his portable VAC unit chirping in the next room. I suppose “chirping” is a euphemism; those disposed to more sophomoric senses of humor (his included) have a different word for it. “The silver lining is that there are no more awkward silences,” he told his dad and me the other day. “I’m chatting with a hot chick, things go kinda’ quiet for a second, and then pbbbbbt!. Girl starts giggling, and we’re talking again.”

His sense of humor appears to have survived these tribulations intact. I am profoundly grateful for that.

What hasn’t survived intact is his physique. The infection and a violent allergic reaction to an antibiotic caused his formerly fit and athletic body to enter into a catabolic state, temporarily. He lost an estimated 85 pounds in six weeks as his body literally began feeding on itself in order to survive. What was left of him was mostly skin and bones, light brown eyes large and luminous, set in a face much too narrow and pinched.

I’ve watched news shows and documentaries about the starving poor in many African states, and felt sorrow for the mothers who watched their younger, frailer children dwindle away to nothing before their eyes. I know now that what I felt before was a mere shadow of the sorrow those mothers felt as they grieved through their children’s slow surrender unto Death. The latest reports from Niger continue to haunt me — I look at my son, and wonder how handsome or charming those skeletal children might have looked like if they’d been well-fed…

My son is now on a 6,000 calorie a day diet. At 21, he’s loving this, believe it. If he’s awake, he’s eating — and protein is the name of the game. “I eat like a hobbit!” He smilingly told the nurse this morning. “Breakfast, second breakfast, elevensies, lunch, tea, dinner, supper…” I can attest to this, as the person mainly responsible for keeping him supplied with caloric intake. It’s strained our food budget past the breaking point, but no one here is really counting the cost. It’s all worth it when the scales at the doctors’ office show him gaining back five to seven pounds a week.

There are always ways to replace money, after all. There is no way to replace him.

I mentioned the allergic reaction to antibiotics as the main culprit in the sea change my son has undergone. I ended the last article by mentioning the “change in treatment” the doctors were ordering in response to my son’s mysterious symptoms in hospital. The change was to vancomycin.

What followed was a week of dangerously high fevers, an all-over body rash (I do mean all over — it was even inside his lungs and mouth) which turned his skin an ugly, violent purple. He swelled up everywhere. His appetite vanished, and any food or drink he took in by mouth was vomited right back up. His blood work showed dangerously elevated liver enzyme levels. Maddeningly, none of the physicians wanted to admit that the vancomycin was the cause, even though the symptoms started they day they switched the antibiotic and continued no matter what else they did. They left my son on this killer potion for almost a week while they dithered and discussed among themselves what could be causing this, leaving us completely out of the loop.

I talked to doctor after doctor, nurse after nurse, trying to get them to see what seemed so obvious to everyone outside the medical establishment. The infection control doctor said, “Vancomycin only results in allergic reactions in 1% of patients.” He was one of the more patronizing and arrogant of the personalities we had to deal with on a daily basis. My son and I chorused back, in almost perfect unison “So who says he/I can’t be in that 1%??”

Finally, one of the doctors copped a huge clue and ordered the vancomycin removed. The fact that I got more than a little waspish with her may have also prompted things along.

Over the next week, the fevers slowly diminished. The liver enzymes kept rising, peaked, then started to fall — vancomycin apparently takes its time vacating a host body — his skin returned to a more normal color, the rash disappeared. His appetite returned, but by this time the damage had been done. He was catabolic, and that insufferable hospital food was doing little to nothing to help him change that.

I went to a nearby grocery store and spent a lot of money buying him food he could keep in his room and eat without disturbing the nurses or the “kitchen” for it. The doctors began pushing for a feeding tube. My son and I both tromped on that — his body had been insulted enough by hospital procedures. We didn’t want to give his body one more reason to react badly, thereby even further postponing the reconstructive surgery on his leg. “If you can keep from poisoning him any further,” I snapped at one unfortunate doctor, the third proponent of this, “he’ll put the weight back on.”

To his credit, he apologized, made some reassuring noises, and left. I tracked him down later and apologized, too. My temper was rearing its head rather often after a month of erroneous diagnoses and dangerous treatments, but it was no excuse for me to take it out on him. I do maintain that every one of them was truly trying to help. It’s not really their fault that they aren’t equipped for it.

In any event, what happened next was that the dead skin left behind after the swelling and rash began to peel away. In sheets. I am not exaggerating — he lost a layer of skin over every portion of his body (or so he assures me. There are some places even mothers aren’t allowed to go once sons grow up). He lost the callouses on his hands and feet. He lost the skin on his eyelids, and “dandruff” doesn’t begin to describe what came off his scalp.

It piled up in his bed. It piled up on both sides of his bed — I’m not sure what “housekeeping” was for in that hospital, but it didn’t seem to have much to do with sweeping the floors in the rooms. Despite their continued insistence on gowning and gloving everyone, they tracked his staph-infected dead skin out on their shoes and into the rest of the hospital. My husband and I just looked at each other and shook our heads — the inconsistencies in their so-called “isolation protocol” were big enough to fling an angry cat through.

The VAC unit just chirped again. My son is sleeping while the home infusion unit drips an antibiotic dose into his veins through his PIC line. He resembles pictures I’ve seen of elderly yogis who’ve spent their lives in the pursuit of enlightenment — thin, frail, but afire with a light that isn’t visible to the eye of the flesh. Everything that was unnecessary has burned away; what’s left behind is essential, luminous.

He’s too young to have spent his life in such a pursuit — he’s much more interested in cars and girls (in that order, I think) to live the life of an ascetic. No, what seared away the little excess he had acquired in his short life was the arrogance, or perhaps the blindess, of modern medicine; a crucible that demands more of its devotees than any guru or ashram ever did.

The second in an ongoing series of attempts for the author to make sense of the expensive, inefficient, and nightmarish health care system, and her family’s experiences while trapped in it.

Quote of the Day: In the pursuit of learning, every day something is acquired. In the pursuit of the Tao, every day something is dropped. — The Tao Te Ching, #48

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