Chapter 1: A Modern Medical Mystery

Apparently, the mystery isn’t in the beautiful complexity of the human body, but rather that there is a whole body to be treated.

The moment I understood it was just that serious was when they told me part of his lung had collapsed, and that they didn’t know why.

He’d been in the hospital a month by then, groggy and itching from continual doses of morphine. I’ve honestly lost count of the times he’d been in and out of surgery to drain ugly pus out of his knee, calf, and bone. A VAC unit was hooked up to his leg, tubes spidering into four or five different sites, all sucking more of that pus out of him. There was a pressure sore on the back of that heel from an ill-fitting partial cast they’d finally removed. He was having unexplained fevers, showing up three out of every five mornings, I’d say. They’d disappear on their own by lunchtime.

He’d at first been in an isolation room, one that has a small antechamber outside it for donning those blue paper gowns and latex gloves. Staph Aureus, they’d said. The worst kind of staph, known as MRSA and it gives every health care worker I’ve seen a kind of terrified shudder when they hear me say it.

I am so much wiser now. I shudder, too.

They’d moved him twice by this time. Although the cultures were negative, they were still requiring everyone who went into the room to gown and glove (I refused the gloves. Silly of me, perhaps, but there is no power on earth, including fear, that’s going to keep me from touching my children). And then another hospital room, for whatever reason hospitals do this. I don’t think it was to give him an ever changing view of the hospital’s surroundings. I had wondered why they’d move a patient with so dangerous an infection into and out of a decent percentage of rooms on the 3rd floor like this, but no one could give me a satisfactory answer. You never really get used to that.

I hadn’t known morphine typically caused a histaminic reaction that made skin itch like mad. It was one of the smaller revelations by that time, one more small disbelief to pile on what had rapidly become a mountain of incredulity. I think I must have been half-numbed when they wheeled a portable X-Ray machine into his room to find out how extensive the collapse was.

I asked the physician to call me when he had results, supposed to be back later that night (he didn’t). I stumbled home, wondering seriously and not for the first time if my son was going to live. The antibiotics were ravaging the body they were supposed to be saving, and every person in that hospital was so locked up by fear of the infection that they would not countenance stopping the antibiotics, not for any reason. Not even to save his life.

What they don’t like to talk about is that their antibiotics created this devilishly resistant form of staph. They’ve used antibiotics to treat staph for decades. Enough bacteria survived those early antibiotics to have acquired a resistance to them. The years rolled by and the antibiotics grew more powerful, which only made the surviving staph bactera tougher and tougher to kill. Nowadays, the antibiotics they use to kill MRSA are capable of wreaking extensive havoc on the human body, damaging the liver and kidneys and in some cases causing allergic reactions that are violent enough to be lethal.

As you can probably deduce, some MRSA is surviving these onslaughts, acquiring resistance even now.

The lung collapse turned out not to be so big a deal after all, relatively speaking. I only found this out two days later, because I pestered a sympathetic nurse until she looked up the answers for me. He was young, they said. He’d probably heal, they said. But there was something they didn’t like about the way he was progressing (probably the fevers he spiked every morning gave them a big clue), so they were going to change his treatment.

I say “they” and I suppose I ought to clarify that. “They” means one of the eight or nine specialists that cycled into and out of my son’s hospital room during his first tenure there (6 weeks). He had an orthopedic specialist (and his relief — do they count as one or two?), an infection control specialist, two plastic surgeons, four “hospitalists” (physicians who work in the hospital but see no patients privately. They see those who have no “family physician” and rotate through shifts), and a gastro-enterologist. I don’t count the radiologist and anesthesiologist. They didn’t cycle through his rooms on a regular basis, nor were they responsible for ordering the truly countless number of diagnostic scans (MRI, CT, Xray) that filled my son’s days and so often interrupted what precious little sleep he was able to get.

So it wasn’t particularly the partial collapse of his lung that particularly alerted me to Death’s hovering presence at my son’s elbow. I can’t really say it was any one thing, specifically, that caused the hairs on the back of my neck to prickle in alarm. It was simply that by the time this happened, I began to realize that these highly educated specialists (some would claim overly educated, and with reason) really had no idea what was going on, overall. They were all treating pieces of my son, but not even the hospitalists were looking at the whole person, his background, his personality, his lifestyle to this point. They couldn’t even seem to take his disparate symptoms as part of a whole person’s reaction to severe trauma. What was worse, this wasn’t a unique or rare case. It was happening all the time.

I went home that night, and I am not over-dramatizing to say that I heard Death’s murmur in my ears all night long as I sleeplessly endured the darkness in an attempt to will my son to go on fighting, to live. Irrational perhaps, I know — but I’m not the first mother to have experienced it. Sadly, I know I won’t be the last.

They were going to “change his treatment.” Remember that, for another part of this story will pick up there.

The first 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: Courage is not the absence of fear, but rather the judgment that something else is more important than fear. –Ambrose Redmoon

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