10 June, 2010

The Truth of the Matter

Jake usually has a hard time readjusting to life after anesthesia. I remember getting my tonsils out and crying and fighting with my parents for days afterward, my emotions a raging mess. There's a term for it: post-surgical depression, although the term seems to be used interchangeably whether you are discussing the depression after surgery, or the recovery from anesthesia. I suppose most people under general anesthesia are probably getting surgery, so perhaps people don't stop to figure out where the depression really comes from, is it the emotional release after a stressful event, or the medication itself, but back to my point.... Jake has a really hard time.

Once a year he goes under general so he can have routine dental care. It is not cheap, but it sure is effective, and the dentist and the anesthesiologist are both so wonderful, I can't imagine not going back to them each year.

The first time we went it was after I saw something red on Jake's tooth. Sadly it was a cracked tooth, half of it missing, and the one on the other side was cracked as well. And of course we have no idea when it happened or how, but we think it may have occurred from coming down hard on his chin and his top teeth banging down on the bottom during some fall he had at the end of that summer. After we found those cracked teeth they were extracted, or at least what was left of them was extracted; He also grinds his teeth terribly. Then we put spacers in, cleaned his teeth and sealed them.

Another year it meant replacing a spacer which had disappeared (did he swallow it?) and filling a cavity. This year it was simple, remove the spacer (one was gone already...again) and clean his teeth. No cavities, no spacers. His teeth are in great shape. I attribute this genetics mostly, but also to the minor but consistent work we do getting Jake more used to a toothbrush in his mouth (a tooth brush that is actually moving and not just being chewed on) both at school and at home. We also make sure he has water every night before bed, he eats a lot of crunchy, plaque clearing food, like apples, and he doesn't have sugary juices all day long. According to our dentist, it's not the amount of sugar you take in, but the duration that really gets the teeth. Eating a pound of gummy bears in one sitting is less damaging to your teeth than drinking from a sippy cup of juice all afternoon. Thank goodness, because I let him eat a pound of gummy bears just the other day.. kidding.

So the joy of no tooth problems has been slightly overshadowed now by the aftermath of the anesthesia. He spent all of Thursday, after the dental work in the early morning,  being groggy and unstable. You think that kid has ataxia on a regular day, add a touch of Versed to that cerebral palsy and see what happens. I could not be farther than 20 inches from him for most of the day. He was starving on Thursday too, after needing to skip breakfast, and we just never caught up on the calories. It seems like he ate or fell down all day long. More problematic was the "bad butt" Jake had Friday and Saturday. It's like his gut just rots, or perhaps we let him eat too much cereal when he begins to wake up, and that's what actually affects his system. Either way it is not pretty for a few days.

Then there is the crying. The crying with tears just kills me. Both of my children can whine and cry and scream and yell, but if they show actual, real, wet, watery tears, 99% of the time it actually means something. It usually means one of them is in severe pain. The most upsetting emotional outbursts are when Jake cries with tears but without an obvious injury. It breaks my heart; he just sobs and sobs, and the tears slip down his face. It sadder than the Native American in that Coca Cola commercial. (How old are you that you know what I am talking about? Ha!) And the crying seems to come out of the blue. And he can't tell me whether his emotions are just welling up and spilling over because of the anesthesia or if there is a new, sad, unknown-to-mom problem.

And then there's the not sleeping. But I'm not really complaining, because this type of not-sleeping does not include yelling (at least not all night) or self-injurious or me-injurious behavior. Last night, Jake's sleeplessness actually came complete with chuckles, snorts and guffaws.

He was laughing and laughing.. and it was, by this time, about 1:30am. He just would not stop laughing. I had already been downstairs several times, perhaps every 15 minutes or so I had visited his room, and changed his pajamas each time.

Why? Okay, here's the truth.

Jake wasn't just awake and laughing, he was also taking off his pajamas (and diaper) and PEEING everywhere. Well, not everywhere, but in little puddles, next to his bed, in the hall, onto his pajamas. He thought it was hilarious. Each time when I walked him to the bathroom he would laugh even harder and try to go back to bed.

This is a big deal and not because I needed to clean up a mess or six, but a big deal in a much more exciting way. And I'll admit this is where I like to take credit for noticing small victories in the face of adversity, but this little game he's playing means Jake is getting closer to toilet training. This peeing on the floor thing is very typical behavioral development for NT kids (at least some (most?) of the ones I've met.) We have a long way to go, but he is learning and using his body in new ways with different awareness. And yes this is part of what I was talking about in that post about shame, but we are going to get there with good structure and consistency..but hey... Jake can now take down his own pants when he wants to pee! That is a huge accomplishment for a boy who does not have pincer grasp, and has a variable grip. Hooray for new physical abilities!

****

He's down there again this evening wandering between the hall and his room and Lucy's room-- four and a half hours past his bedtime and I know he's awake. He occasionally drops toys over the gate, or more likely a sippy cup because he knows I will bring it back to him, and I can hear his feet slipping across the hardwood. And one of my favorite sounds,  his muffled happy squeal as he buries his head in the pillows and blankets. 

So then, back to it.
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