Sunday, March 23, 2008

Do we really have to...?

Control over one's environment and oneself is a big part of the preschool years. Henry has of course lost a lot of that, especially when we are in the hospital. Not only are we essentially locked in a room (a goodsized one for a hospital room, but nonetheless) he has about 3 feet of tether to an oversized and constantly beeping IV pole. And that's when he's feeling good enough to get out of bed.

I see him looking for control in other places, understandably. He's certainly had some behavior regression - who can blame him? And when I'm rested, objective, on my game, it's all very clear to me why he's behaving the way he's behaving. Unfortunately, sometimes I'm not rested, objective, or on my game.

During Henry's last hospitalization, he gradually added layer upon layer of ritual we had to perform to get him to do things like take his medications or cooperate with his vitals. The penalty for one misstep in the temperature - blood pressure - pulse ox dance was a serious tantrum. By the time we were discharged from the hospital he had the rounding team turn around and face the wall so that one physician could examine his mouth. I had to put lotion on the leg of his choosing before putting the blood pressure cuff on - and there was only one nurse that was allowed to do that. I had to place the doctor's stethoscope on his chest so that he could be examined. It really was getting ridiculous.

But what do you do? Play along, that's what. Thankfully, the nursing staff and the physicians are incredibly understanding, and patient. I suspect Henry's not the first to exert his control this way.

There are so many reasons to dread his next chemo admission. Strangely, this one really ranks up there for me. The thought of (at least) 24 days in a small room at the whim of a three year old is suffocating. Of course, we'll do everything we need to do to soften the admission for him. But vitals are every four hours....for 24 days.....

I find myself trying to talk him down from some of his rituals, thinking "Jeez, Henry, do we really have to go through this entire bit just to take your temperature? You know we always eventually talk you into it..." His anxiety and anger and tantrum escalates till I cave, every time.

What I realize now is that he's probably thinking the same thing. "Jeez, Mom, you know that you have to pour me fresh juice that I won't drink and wait five more minutes and then five more minutes and then till the next commercial on TV and then listen to me fuss before I'll take my medicine. Why don't you just accept it and quit trying to talk me out of it?"


Anonymous said...

Dr. Smak, having never been locked in a hospital room (no matter HOW BIG IT IS) with my child for more than one day in a row, I have absolutely no idea what you and your family have gone through.
But your writing sure gives me a glimpse of what it must be like.....pretty damn awful.

Am sure the thought of another day of the "rituals" is exhausting.
Please let us know how we can help.

love K3P3

Jen said...

I think that the insistence on "rituals" is pretty common- I'm glad that the doctors and nurses are cooperative. My daughter used to scream (not just yell, but screech) loudly enough to wake the dead when she'd get bloodwork done or injections, even through her port-a-cath, because she said that it "distracted" her. And we had the "special" blood pressure cuff, and God help anyone who forgot it.

Our thoughts are with you- I think that those days that we spent in tiny little hospital rooms were the most draining things that I've ever had to face. I hope that your next chemo round passes quickly and successfully.