Wednesday, September 19, 2012

Ups and Grumps

Oh what a day of ups and downs it was.

Things started very well. Sam has an ANC of 36!
(This, of course, made me burst into tears and then spend a few minutes teaching our nurse practitioner about gematria. Because, you know, that's what I do.)

Remember how I said we were on two different antibiotics (vancomycin and cefepime)? They added a third today (tobramax), because one of the bacterial cultures came back positive (which, while "normal in Cancerland," is not actually positive. I mean, honestly, don't you think they could rename some of these things. Just like the Pain Team should be renamed the Anti-Pain Team. But I digress...). So now we're on three antibiotics.

Stay with me.

A little later, one was dropped, since he'd been without a fever for 24 hours. Which is good, since that one takes an hour to run (vancomycin, if you're keeping score). So, we were down to two.

Until just a little bit later, like, um, 2 minutes after his "final" dose of vanco finished, guess what? Another fever! So....welcome back, vanco!

Then we got the cultures back. Turns out it is another bacteria? So we added flagyl. If you're keeping score at home, now we're at four antibiotics.

Then finally, the lab came to its more final conclusion (I say more final because I frankly have no idea what tomorrow will bring) so now we're back to two. But I've totally lost track.

Haven't you?

(I know this sounds like total medical incompetence, but it's not. They get a preliminary lab result which leads them to one family of antibiotics and as they get more clear results - which take time - they narrow it down. Better to be safe than sorry, which is totally true. These bacterial infections are actually the whole reason we are here in the hospital awaiting counts recovery instead of relaxing at home.)

But none of that medicine switching is what made the Grumps part of the day for the kiddo. Sam just wasn't himself. Maybe it was the fevers, maybe it was the fact that it's been 22 days, maybe he missed the family just a little bit extra today...whatever it was, Sam had a lot of ups and grumps. Some of the moments were great, but he was really touchy. I definitely walked on eggshells today, not sure how he was going to react to things. Normal things. Things we do all the time. He just wasn't very happy...oy.
Only a 6 year old boy would think that toilet candy is funny....
FaceTime made Sam feel better today
Art is good therapy! There was a lot of art today.
Today was one of those days where I just didn't know what to expect. If you'll recall, Sam hates his IV pole. He refuses to go out while "hooked up" and he will barely even walk to the bathroom when connected. Except today. "Let's go!" he said. And then I said, "sure, when you're done being hooked up." And he got mad at me. "No, now!" he said.


Turns out, he figured out how to "ride" his pole like a scooter. (Then he got mad at me when I tried to take a picture. He actually made me delete the picture I took. Which was better than this one....)

And then there were moments when he just laid in bed and stewed about how mad he was to be in the hospital. And perhaps he didn't feel well. Which is to be expected, right?
Over and over...I said to myself...."This too shall pass."

Sooner rather than later would be preferable, though.
I'm just sayin'.


  1. oy, hang in there Phyllis. You both (all) deserve to be cranky, grumpy, whiny, weepy, etcetc all mixed up together! Here's hopin' for a much better today tomorrow :)) Gmar tov, Liz

  2. Oh, what a day. Poor Sammy's flora and fauna...all those antibiotics...I know they're all necessary to help, but still... I used to get so frustrated, so un-comforted, when my dad said, "This too shall pass" because it felt like he was just disregarding how bad I felt at that moment. It's awful NOW...don't tell me it's going to get better before you agree that it's awful NOW! So, yes, it's awful NOW for you and Sammy and everyone in the family, and you're totally entitled to the grumps because sometimes they just make you feel better than the cheeries. You're allowed. Thinking of you, as always, with great love.

  3. I'd be a whole lot worse than grumpy, I'm sure. Sam's a rockstar with the way he's handling all of this, and so are you! Big fat squeezy hugs to both of you - hang in there!


  4. a wonderful year of good health to all of you

  5. Hoping for a better day today...for both of you.
    Kudos to the kiddo for figuring out how to "ride" the pole! Very cool!

    xoxo from NYC.