Tuesday, July 3, 2012

Fun With Medical Supplies

The staff talk a lot about empowering the kids who are stuck here in treatment for leukemia. They remind me that so much of the "control" of their lives has been removed, whatever element of power and control that we can give to them (or that they will take) is welcomed.

Sometimes this is very successful.

Sam now knows how to take his temperature. "Is it time for my vitals yet?" he says, as he holds onto the thermometer and makes it work.

What, this old thing? Sure, I'll take my temp for ya.
He knows how to remove the blood pressure cuff, he takes off almost all of his own dressing when it's time to be changed (yeah, no pics of that from this squeamish mama), he gets to choose which toe takes the pulse-ox monitor, he can control the height and angle of his bed... you get the idea.

Someone is proud of himself...
He calls it his "nest" when it's up as high as it can go and he's all snuggled in there.
That's not a mask, it's a hat? Or a headband? Or something.
It's good to give over control of the things that don't matter so much.

But the nurses and doctors and psychologists also remind me that limits are important. The kids who have limits set, they say, ultimately do better. The kids whose parents help to carry rules and routines over from home have an easier back-and-forth transition, as well as a transition at the end of treatment. So they say.

That doesn't make it much easier here, though, when Sam is pushing every limit he can find.
Eating in bed? Nope, that was just the first week.
(Eat anything you want? You betcha.)
Screen time all you want? Seriously!? Did you think we would fall for that one?
(Screen time as reward for eating? You betcha.)
Being rude to nurses or other health professionals? Don't. You. Dare.

Hospital parenting is trickier than I ever imagined.


Today was a sleepy day for Mr. Sam. A blood transfusion knocked him out a little bit, but he managed to put together part of a puzzle before conking out with a "please wake me for the fireworks" comment. He wouldn't take a walk (he hates that blasted pole) but he did a little bit of moving around the room and growling at me...combined with a smidge of flirting with the nurses, I'd say he's doing okay.

And yes, the day ended with fireworks. From the playroom on our floor, we could see the display from Milwaukee's lakefront. It was pretty amazing, especially since Sam doesn't really ever recall seeing a fireworks display before. That is actually entirely possible.

It was quite poignant, though. There were three bald kids, each with an IV pole, with nurses moving in and out and around. And there were three mamas....hovering near their kids. And all of us were discussing our home fireworks displays....and the fireworks at DisneyWorld...and there was that sigh from each of us...missing home, missing reality, missing our lives...I think it might be better that Sam doesn't remember what he's missing. I certainly do.

One of the nurses needed a quick lights-on for an IV change...so I used the opportunity to snap a pic.
Here's looking forward to celebrating Independence Day next year in a new way - independence from the pole, independence from the hospital, independence from leukemia.

May it be so...


  1. Yes... absolutely.... may it be so...

  2. Heres knowing next year will be different. ~hugs and love~

  3. I wish to Sammy to celebrate 4th of July next year away from the hospital and away from the leukemia; I wish him to be completely healthy and happy kid!

  4. amen
    glad that he's behaving just like a kid should

  5. Can I just say Ditto to Tonka and Batya's comments especially? Finally dropped pics with a small Batman project -- coloring based, good for doing while hangin out in bed etc. in the mail today. Should have it Thursday ish. Your pics are incredible. Ben talks about wanting to be silly for Sam to make him laugh. Maybe a series of funny faces? hmmmm Sending love and hugs!
    Stephanie and all the Kerches (the Duchess is what my mom liked to call me when she thought I was giving attitude)

  6. I read your blog every night I work as a third shift nurse. I miss seeing Sammy and hope to see him soon. All of you all are in my thoughts and prayers.

    Daniel Sinkhorn

  7. Amen to that! Already healed!