At age 11 and out of the blue, Jimmy lost his balance. His diagnosis is Acute Cerebellar Ataxia. He is currently wheelchair bound and we are working hard to find whatever it is that we need to fix. Here's where I'll try to keep everyone in the loop about what's going on.

Friday, May 7, 2010

These all go to Eleven.

How could I not quote the movie that shares a name with the procedure my brave boy had done today? I might have to watch it tonight to pay homage, I'm in just the right mood for awkward laughter.

We're home, it was a long day. We checked in at 10 (after being late getting Clara to school because she informed me on our way out the door about what she was supposed to have done for her mother's day project). The joint was packed. Such sick kids in there, it just tears your heart apart. That feeling fades a little after three hours of waiting for our turn while listening to each one of those poor sick babies cry themselves to sleep and then wake from anesthesia and scream their heads off for the hour they were supposed to lie flat. I kept asking, but no one would agree to sedate me.

He was a trooper, as per the new usual. A child life specialist came and talked to him right when we got there, she let him use a real syringe and tube to start an IV on a cabbage patch doll, and then showed him a photo book of another kid getting a spinal tap. He got his IV, and we chilled out watching game shows and steadfastly not eating or drinking.

When it was Jimmy's turn, they rolled his bed into the procedure room where we met the anesthesiologist, the nurse practitioner who would perform the procedure, and a nurse. We both had the chance to ask questions and see everything, the anesthesiologist asked Jimmy what his allergy was (he wears a red admit bracelet because he's allergic to penicillin), and he answered: "grass and cats." LOL.

He had three injections into his IV, the first two made his eyes all screwy and he was just about to start yakking when the third went in, and about 2 seconds later his eyelids slammed shut and he was out cold. I gave him a kiss on the forehead, told them to take good care of him, and left the room. Then I had what I consider a perfectly natural reaction to the current situation - I started bawling. You'd think that in the frigging oncology/hemo clinic, they'd be desensitized to crying mothers, but they all jumped into action. It was weird. A super annoying woman came in to tell me not to crumble in front of my son, told me her son's big story, and told me a bunch of condescending shit I already know and was not interested in hearing. I just stared at her clumpy make up and responded sarcastically inside my head. By the time she left, my boy was wheeled back in all curled up in the fetal position under a blanket. He was totally cashed out, I just got to stare at him and touch him and breathe again. I feel much better when we're together!

He started to wake up soon after, and was cute and weird and kept asking me the same questions over and over. I gave him a granola bar and some water, and he had to lie flat for an hour. When that time was up, the nurse came and took out his IV, and she thought he felt warm so she took his temperature and it was 100.4, so they made us stay a little longer. I went for sandwiches, the doctor was paged, they monitored him for an hour and it went down to 99, so they sent us home. He on the couch, a little sore. I just gave him an advil and set him up with a heating pad, a gatorade, and the remote control. He's been promised pizza when he gets hungry, and we've got Rocky to watch tonight. Another day, another drama. I talked to the neurologist a little while ago, he wont get some of these results back for a week but he'll call if anything comes up before then. He reassured me that nothing he might find in these tests would warrant any urgent intervention, we continue to coast in this holding pattern, just waiting for things to improve. I'm determined to get him in to Physical Therapy next week, I'll keep y'all posted!


  1. well...thank goodness that part is over.
    Thinking of you all.

  2. That is a tough procedure. Jimmy is brave. Hang in there :)

  3. Thank you for every detail. And your future self will thank your current self for every detail.

    I love "grass and cats".

    I wish I could be there to help out. I'm a very good helper.

    I love you, schnookie-pie.

  4. that sounds so-not-fun! you're such a trooper. when cortney had her surgery years ago (she was about 12) i was such a mess that i went to the nurse and asked if there was a trauma team standing by. they assured me that she wouldnt need anything that extreme, I said, "not for her, for me!" and proceeded to crumble into a mental and emotional mess. Keep me posted, i check your site every day!

  5. Things can only get better from here. You are all so strong, keep fighting on. My faith and prayers are with you.

  6. BIG hugs from Hannah and I! Jim is a total trooper and we all knew he'd rock the spinal. =)
    Stay strong and positive. X

  7. Jacquie - you are amazingly strong. Thanks for the detailed information. You, Bill, Jimmy and Clara are in our prayers. Buck.

  8. Ellie is such a good helper.

    And as for the annoying mom, I'm very impressed you did not comment ( out loud). What a complete self- centered idiot she sounds like. You're not allowed a few tears? WTF?? It's not a bad thing to cry. Why do people get so weird about it?!?

    Hope Rocky & the pizza rocked.

    Love u guys!!