Thursday, December 15, 2011

a diagnosis and a decision

Elan, nearly 5 years old, November 2011

Back in October, we took Elan to the Stanford Sleep Clinic. The doctors there examined him and then took a complete history, which translated into an hour and a half of us talking, trying to explain exactly how it is that our child doesn't sleep. That's an exaggeration. He does sleep, obviously, otherwise I would have sold him on Craigslist by now, or checked myself into a mental institution. But he sleeps fitfully, with frequent wakings, regular bouts of flinging himself around, and much screaming. I hardly even know what it's like to sleep an entire night without being jolted awake by sudden screaming. It's happened a few times in the last five years, but not much.

Shortly after our initial appointment, I took Elan back to the Sleep Clinic for an overnight sleep study, otherwise known as a "sleepover." He sat in a swivel office chair watching movies, patiently doing his best to ignore the technician covering his body and scalp with electrodes glued to his skin and attached to wires. We joked about how he was turning into a robot, and I snapped a few pictures, but truthfully, it was a little disturbing to me to see him hooked up like that, and when he looked at the pictures, he didn't like them. I think he found it disturbing too.

Drugged by slow-paced children's movies, he finally fell asleep. I slept on the "parent surfboard," mounded with blankets to soften the hard surface. He had quite a few episodes that night, screaming and carrying on in that way he does, when Mikhail and I can't figure out if he's awake or asleep. In the morning, we packed up our stuff, got the glue off him as best as we could, and went to Hobee's, a local chain restaurant I have fond memories of from my time at Stanford. But the BDBIT (Best Darn Breakfast in Town) wasn't as good as I remembered and Elan didn't touch his pancakes.

Being impish

A few days later, we got the results of the sleep study. Obstructive sleep apnea, a mild to moderate case. You could have knocked me down with a feather when I heard that. Breathing problems were the one sleep-related ailment we felt sure he didn't have. The classic noisy snoring and audible stop-breathing episodes that define sleep apnea -- we've never heard them in Elan. He has a much more subtle case, with more hypopnea (reduced breathing) episodes than actual apnea (stop-breathing) ones, and a very quiet snore (I learned that, at least in children, audible breathing counts as snoring - who knew?). But there it was, in black and white in front of me: an API (Apnea-Hypopnea Index) score of 12. Which means that approximately 12 times an hour, Elan's blood oxygen level drops substantially enough that his brain wakes his body up to stir, change position, and enable him to breathe better.

Today, after multiple opinions and conversations and visits to two local pediatric ENT (Ear, Nose and Throat) doctors, I called to schedule a tonsillectomy and adenoid removal for him. Given the specifics of his case, the decision to do the surgery has not been an easy one. It might be an extremely common surgery, but it's still surgery, and Mikhail and I had to feel sure that it was the right decision. Now it's made, and I'm hoping and praying that it works. (And that the procedure goes fine, and that the recovery's not too bad.)

I keep trying to write about this - the diagnosis, the decision-making process, the entire convoluted universe that is sleep in our household. But I keep getting caught up in the details, unable to see the whole picture, and, ultimately brought down by the anger and sadness I harbor about how exhaustion has so defined both Elan's childhood and my experience of motherhood to date.

I'm really mightily pissed about it, you see. And, even as I write that, I feel the burn of tears just below the surface. So many times, I have wondered Why. Why can't he sleep? Why won't he sleep? Why doesn't he sleep? And How. How do we get him to sleep? How do we survive the ongoing struggle around sleep? How do we make sure that chronic exhaustion doesn't too negatively affect not just Elan, but also both Mikhail and me in our everyday lives, in our marriage, and in our family as a whole?

There are many reasons that lack of sleep is a form of torture. I could sure make a long list myself. But the main one, the one that's on my mind right now, is how being tired makes you unable to deal with adversity. I see that effect played out in Elan's behavior day after day, some worse than others, depending on how he did the nights before. Sometimes, I'm caught up in the symptoms of sleep deprivation right along with him, rallying against how his sleeplessness screws up my life. Other times, I can stand outside and watch with compassion as he struggles to learn how to control his own emotions, a trying process for all preschoolers, but especially those who never get a good night's sleep.

Whistling, kind of

So what I want to ask for, as we enter the holiday season, is a little hope sent our way. I'm not one to ask for prayers. I generally feel uncomfortable with the whole notion of talking about prayer, while I do sometimes do it myself, and I feel doubly uncomfortable asking others to pray on behalf of something in my life which, while difficult, is thankfully not serious in a life- or limb-threatening kind of way. But we sure could use some hope. Good vibes. Love and luck sent our way. The first surgeon we saw made sure to lower our expectations, telling us that given the particulars of Elan's case, he couldn't be sure that the T&A would fix the problem. The second surgeon was more optimistic and said she doesn't see why it wouldn't fix the problem. Today I called the second surgeon. I need some optimism around this, some hope that putting all my eggs in the tonsillectomy basket won't leave me with nothing more than hands full of broken shells and slime pooling around my feet.

I want my kiddo to know what it feels like to be well-rested. To wake up happy, ready to greet the day, not lying in bed crying and moaning in the dark morning hours because he's awake but still tired. I want him to experience the normal struggles of growing up without the dark lens of exhaustion which fogs even the simplest of tasks. I want to feel well-rested too. I want my husband and me to be able to sleep in the same bed without screaming jerking us awake, one of us sprinting down the hall, then falling asleep in Elan's bed because we know he'll just be up again. I want Emry to sleep without being woken up by his brother's yells, and then developing his own bad sleep habits because it doesn't seem fair to have him cry it out when he's startled awake like that, and because I can't let him resettle on his own with a little crying for fear he'll keep Elan up.

I want, I want.
I hope, I hope.
Let's just say good sleep would be the best darn Hanukkah (and New Year's, and birthday, and Mother's Day, and anniversary) gift I could ever hope to get.


  1. wow. i can't imagine what this is like. you are incredible parents for talking about this openly. I hope your little guy dreams peacefully and this chapter can come to a close for your whole family.

  2. I know this was a hard post to write. Perhaps your willingness to share honestly with others about an issue your family faces will help another couple feel less alone with a similar struggle. I guess that is the basis for support groups and why Hillary's quote, It takes a meaningful for so many. Elan is such a bright and engaging little guy when sleep deprivation does not sap his coping skills. We love him very much as we do all of you and support you in your tireless efforts to make his and your situation better. Much love, Mom