Monday, February 7, 2011

Ruby Slippers

At 5 am, we woke Simon to give him his anti-seizure meds and a drink of water, before getting ourselves dressed and ready to go to Hopkins for our 7 am MRI appointment.

I'd packed our bags and set out clothes last night for what I knew from prior experience would be a very long day. Coffee in hand, in the early morning darkness, we drove downtown in relative quiet. Upon arrival, we wound our way through the massive hospital complex (a city unto itself) and in fairly good time we found ourselves within the underground tunnel housing the MRI facility.

This time, the whole procedure went smoothly -- a stark contrast to the last time we did this; when it took five adults and four attempts to get an IV into Simon's tiny arm. When it took over an hour for him to succumb to the sedation, and we almost lost our appointment altogether. Now, Simon weighs enough to get the gas anesthesia, and it took mere minutes for him to go under. He was disoriented and agitated when he woke, but some apple juice and cuddling brought him around quickly. We were out of recovery and off to get bagels in far less time then I'd anticipated.

The next leg of our hospital adventure was not as streamlined. At the Neurosurgery clinic, the group of world-renowned surgeons keep limited office hours, therefore the scheduling staff call patients to inform them when to come in -- there is no such thing as making a mutually convenient appointment here. Just the same, people from all over the world crowd the sprawling reception area, where you have to take a number just to see the receptionist.

We're used to the routine here, as well. Simon was a still bit loopy from the anesthesia, and his magnetic shunt being out of calibration probably didn't help, but he did alright. We were prepared with plenty of snacks, toys and videos. Finally, our turn came, and we were guided into the labyrinth of exam rooms, light box-lined hallways glowing with blue and white scans of brains and spinal columns, and austere meeting rooms with ugly pink chairs.

We were ushered into a private exam room, and when our Neurosurgeon came in, I felt a wave of nervous anticipation. I've always felt lucky that Simon's surgeon is so knowledgeable, his group of doctors recognized throughout the world as one of the best. That we are local and he agreed to see us always seems like a minor miracle. Here, at last, I anticipated some answers. If anyone could tell us what was happening in Simon's brain, why, and what to expect next, this was the guy.

Here at last was the great Oz, and we were there to ask for help -- his brain, my heart, our courage. How appropriate.

So, when the doctor matter-of-factly announced that the new MRI looked the same as the scan we had done last year, pre-seizure, I was surprised. Nothing had changed. The shunt looked fine, and though the existing damage from the initial stroke was still there, there wasn't anything else. No new scar tissue or other irregularities to explain the sudden onset of Epilepsy. No new damage caused by the 2 hour seizure.

At first, I felt relief. I'd been so afraid to hear that more damage had been done. That more black holes had appeared on the scan. That the sequella from this last traumatic event was just starting to make itself known.

So, unexpected but a good answer. No more damage, nothing worse. Yes. So, Simon's behavioral changes are definitely due to the medication, not an altered personality (though we were cautioned not to consider changing a medication that was working). The shunt is still doing its job just as it had before. Good.

But, hang on a minute. Answers. I needed them. What happened? WHY seizures, why now, and why at such frightening life-threatening intensity? Why the unexplained bout of additional temporary weakness on his left?

In answer, the man came out from behind the curtain. The assuring, knowledgeable, and brisk demeanor of our Wizard faded like so much smoke. With a shrug, a smile, and a slight chuckle, he answered us with a question. Why hadn't Simon's seizures started earlier? Why now? Why not? Simon's brain is not normal. Abnormal brains do abnormal things, and, it turns out, even the best Neurosurgeons in the world don't really know why.

Okay, we don't know what caused it... but why no damage from the prior event? Why no worse outcome when everything I'd read indicated that was typical. How did we get our miracle this time? Another shrug. Another smile. "Kids! They surprise you."

I did, however, get one final answer, though maybe not the one I was looking for. Should we expect more seizures and other unexplained events in the future?  Yes, most likely given what we do know. We're also probably looking at other learning "differences," akin to our language delays and sensory disorder. But what, and when, who knows.

Smile. Shrug. And that was that.

The Surgeon and his assistant reprogrammed Simon's shunt with a magnetic "tuner" (I'm sure it has a more technical name, but that is what it does) to get it back to the "tightest" setting of 2.25. They wished us luck and said they'd see us next year, for another MRI and another check up. Hopefully, it will be an uneventful year.

Surrender Dorothy. Or, follow that yellow brick road, and stop asking what's over the next hill.

On the way out, I felt curiously deflated. While I hadn't wanted to know about more problems, I had hoped to find some answers. I wanted to understand what had changed in my son's physiology that would account for our new worries. Maybe I just wanted SOMETHING to blame. Something specific, a witch whose name I could invoke when angry, frustrated and scared. Something to focus on to give myself an anchor, however false or irrelevant, to regain a little lost control over the universe.

On the way down the hospital corridor that opened out to the reception area, I felt the sting of tears prick my eyes. I hate to cry in public, to lose even a little control, or to be less than completely strong. As I rapidly blinked back my tears, I got the familiar eyeful of reasons to stop feeling sorry for myself, and my son. Children and adults waiting for their turn to see the Neurosurgeon. Many looked as normal as we do (or more so), but as always, there were those individuals so profoundly affected by their particular brain abnormality that they weren't able to move at all, or even process their surroundings.

I found myself wondering if their families were there, like I was, on a pilgrimage to find answers. Why bad things happened senselessly to the ones they love. Why their beloved faces such unfair challenges. Like me, did they question how they would be able to help, if they couldn't understand the source of the problem?

I wondered if the surgeon said the same things to them that he said to us. Did he peek out at them from the safety of the curtain we put him behind, with a shrug and a smile. I wondered if the surgeon felt badly, knowing that so many people here were looking for him to be their wizard. Hoping he had magic and miracles, when sometimes all he had were questions, and the sum of his varied experiences. Abnormal brains do abnormal things and they don't really know why. They don't know why the same condition or damage can affect one person mildly and another profoundly. They don't know why some people recover, gain or regain abilities, and others do not.

This once, empathy didn't make me feel better. Nor did I feel less empty realizing that I was far from alone. The grayness of the hospital and the contrast between the humanity of the patients and the impersonal staff felt starkly oppressive. The great and powerful Oz had no answers for me today, and my yellow brick road was winding dizzyingly far into a distance I wasn't sure I wanted to see.

Thank goodness for ruby slippers. We went home. We hugged, and I let myself cry. Overwhelmed by my stormy emotions - relief, and aprehension in equal measures, anger at myself for failing to be positive when I should be grateful. I let it all just be.

I put in a video so a tired and slightly loopy Simon could relax, and my sister called to check on us. She actually understood my convoluted mixture of emotions and helped me sort through them. I hung up and felt the emptiness lessen. I felt less unreasonable, and my flying monkeys of self-doubt were temporarily quelled.

At that moment, a particularly silly scene in Simon's video began. From the sofa came a deep, rolling belly laugh. Simon's contagious mirth bubbled and overflowed and I laughed with him.

He is okay. I am okay. There are rainbows to be found.

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