Sunday, October 23, 2011

This side of anesthesia

I recognized that everything was black. An interior sensation--that was the first thing. The second was someone calling my name, once, then twice.

I opened my eyes and I was back in it. Just exactly as I was told. The last thing I remembered was asking the anesthesiologist whether it was normal for my arm to feel numb. Then nothing. Then the other side.

I'd walked into the operating room with the nurse by my side pushing the IV pole. My primary focus was to avoid bending my elbow as the hep lock was in its crook. I'd been through too many episodes with Robert in which the IV was dislodged, and re-inserting the needle hurts.

Most of Robert's recent surgeries and procedures have taken place in fairly small outpatient rooms. It's been a while since he's had anything in a surgical theater, and, even then, I accompanied his white-sheeted gurney only to an antechamber.

This surgical theater was larger than I expected, with equipment pushed to the perimeter. It was pink. The ceiling was high and the lights were bright and the operating table was in the center with two long trays for arms set out akimbo like snow angels. I admit I felt an involuntary surge of concern. Maybe it was habit. But I'd never actually been under anesthesia--epidurals and local plus Valium are not the same. Even this was not general--just a heavy sedative.

I've never even fainted, let alone lost consciousness to anything but sleep. Anything that would, as long as it ran through my veins, prevent waking.

Of course it was fine. I knew it would be. That's the logical thing to think. And this was just a minor operation on my foot: I'd developed a hematoma (or so I found out afterward) that refused to break up and dissipate, instead inconveniencing me by growing larger just below the ball of my foot. Walking without pain is a good thing.

In the meantime, as I was moving day by day toward this scheduled procedure, Robert had started breathing strangely. Not that he was gasping for breath, not that he couldn't breathe or was breathing raggedly. No none of that.

Robert can make a breathing noise that no one can imitate. Sometimes we call it his scary breathing noises. Sometimes we call it his Darth Vader breathing. It involves a sharp intake of breath that medical professional refer to as 'strider' breathing, so sharp that the effort of it sucks in the inverted triangle at the dip in the collar bone. The entire effect of it is on the intake, and the noise is a rattling roar with just a touch of a mild honking at the outset. Letting out the breath is a mirror image, but softer.

I felt I understood something about this as I was plowing through John D'Agata's About a Mountain, and one of his digressive riffs mentioned, in passing, that the human larynx contains many more folds than we actually use, the residue of evolution. In a handful of cultures, worldwide, humans are able to use these folds for some vocal effect.  I thought, aha, Robert, in his spare time, has figured out how to make those parts that no one wants or needs dance to his tune.

Most often, these noises he makes are communicative. He's bored. He wants to draw our attention to something. He wants a change. He wants to annoy us.

For several days leading up to my surgery, Robert made these noises non-stop. We joked about them with him--we asked him if he was in his rebellious teen mode and whether he was trying to annoy us. Sometimes he would smile. We made many efforts to try to figure out what he might need.

The noises continued unabated, until last weekend, he made them for hours at a time. One afternoon, he made them non-stop from the time I picked him up at school, through the drive to HSC, through physical therapy, on the drive on the way home. In the house. I tried to tell myself: the kid is disabled, I have to try to talk with him, I've got to figure this out. And I wondered if it were normal for sensibilities to go numb because of this. But over 3 hours of a noise loud enough to drown out the radio or the TV? Let's face it. I snapped. You have to stop it, I said loudly, no one can stand this, no one can.

Of course I felt an instant remorse. As instant as a flush of pink powdered breakfast drink stirred into milk. Because then it occurred to me that maybe he couldn't stop this. Maybe there was a problem. His mouth often hung slack while he honked and rattled and wheezed and, eventually, coughed.

Robert had had botox for spasticity on October 7. Unlike other parents who google absolutely everything, do their homework, come up with questions, I find myself simply deciding to trust Robert's doctors. I figure that's their job. That is, if what they tell me makes sense. And this did. Maybe the botox will release some of the spasticity in his legs making him uncomfortable. Maybe it will increase the range of motion in one arm. What do I know? I have advanced degrees in literature. I don't know how Google is going to arm me with the same information gleaned through 4 years of medical school and years of residency and practice.

At that point, I do what I'm told. I take my kid to the hospital at 4:30 in the morning. I don't give him any food after midnight and give only clear liquids up until the cut-off time.

What do I know? So I googled "botox" and, of course, came up with a pile of information difficult to evaluate. After sorting the idiot scare pages from those that offered some sort of rational information, I concluded that botox could, possibly migrate and affect breathing and musculature other than what the injection aimed at. On the other hand, Robert was not struggling for air or in any sort of respiratory distress.

So I called the doctor who administered the botox and left a message. In an even voice, rational, stating what appeared to be the objective facts. I am long beyond panic. Panic does no one any good.

Having made the phone call, I tried not to feel anything and just wait for the other side. That's what leaving a message about your child is like: a going numb, the last few said things, then nothing. Then the other side.

The nurse called back, asked a lot of questions. She called the doctor. She called me back. We should take him in.

Because of the anesthesia, I was still a little groggy, not even sure I was making sense. As I'd been told, I would forget things on and off most of the day--codeine made it worse, my brain in a gray zone in between thinking and nothing. So Roger took Robert in.

Robert came back wearing a neck brace, as though he'd been in a wheelchair accident with his friend Greg, and their DME insurers were arguing over the details of the incident and the blame. The white foam collar provided support to his neck and minimized the awful, deadly breathing noises. Most likely, the botox had migrated.

He looked a bit bereft. Maybe embarrassed at the brace. But I remembered calling his name once and then twice, his jaw slack, his eyes staring ahead and ignoring me. The breathing at bay, he started meeting our eyes again.

And we were back in it. Exactly. Re-inserting the needle hurts.


A said...

As you both recover, rent Genghis Blues from Netflix. It used to be a great favorite of Amelia's----she is fascinated by Tibetan, or in this case Tuvan throat singing, using all those extra folds, I guess...

Elizabeth said...

It just never stops, does it? I'm sorry -- and wish you both some ease.

Maggie May said...

This post hurt to read. I am praying for as Elizabeth said, ease for you and your son.