Monday, May 7, 2012

In The Not At All Merry Month of May

To be fair to May, this started in February.

It all started with a picture*.  Gracie with her head cocked to one side, in the kitchen, wearing her Curious George shirt.  It made my heart stop for a minute.  One half of her face was smiling.  The other half was not.  It was the way she had her head turned, it was the angle of the picture, there was a reasonable explanation.  Both halves of her face worked.  I was being hysterical.

*(there will be no pictures with this entry.  I don't ever, ever need to see any photographic evidence of any of this again.  Sorry to disappoint.)

To be honest, I don't even really remember what happened after that, up until the morning when she came downstairs talking out of one half of her mouth.  It reminded me of Tina Fey.  My heart stopped again.  I had to go to work.  I was in a panic.  I couldn't stop thinking about it.  She had recently been sick.  It was Bell's Palsy.  Obviously.  I was being a spaz over a relatively common post-viral finding. ...But.  But but but.  It just wasn't totally right.  Her eye wasn't affected enough.  Something was wrong.  I was sure of it.  After some hysterical tears and deep breaths, a pediatrician appointment was made, and the three of us trekked out to a distant office, the office where our primary doc was seeing patients that day.  By then, her face looked fine and I felt like an ass.  I showed him the pictures, explained what I saw.  He never rolled his eyes or seemed to think I was being ridiculous.  I felt reassured to be taken seriously, but also had secretly hoped he would wave me off.  He looked her over, listened to both of us carefully, and reassuringly reminded me that common things are common.  That even though it didn't look like Bell's Palsy to me, that was the most likely culprit.  He was happy to order labs and/or imaging if it would make me feel better.  I did not want that.  He told me he needed to hear from me immediately if she got worse, and that I should give it time.  And so I did.

I gave it months.

One of my attendings casually asked me if she was all better.  I told her she was not.  She reacted without reacting.  I didn't like it.  I told her I thought it seemed better, but was still definitely there, especially when she was tired.  She conceded that was probably normal. A few weeks after that, we had a play date.  My friend, a lay person, commented that she could see exactly what I was talking about.  That scared me. 

The next day, I showed two pictures to the same attending- one where her face was entirely normal.  Because?  Sometimes it is!  Especially if she's actively working on it.  Then I showed her another picture, one where her left cheek was undeniably dragging down.  She reacted without reacting again, and I tasted bile.  She smiled at me the way I've seen her smile at a million different families, and tried to convince me she needed an MRI for my own peace of mind.  The next day, I made another pediatrician appointment.  Our wonderful, amazing, experienced pediatrician (gray hair is a requirement of all my pediatricians, but that is another story for another day) told me the duration had definitely exceeded his expertise, but that perhaps an MRI would be jumping the gun.  He wanted us to be seen by a neurologist.  I made the appointment myself the next day.  The day after that, I got a call from Maureen.  She told me our attending, the one I'd been talking to, had discussed Gracie with our retired chief of neurosurgery.  That her presentation had been bothering her since I showed the pictures on monday.  That our retired chief chastised her that after three months, Grace needed imaging, and she needed it immediately.  That she might have a Chiari malformation, and asked her how she would feel if Grace had a permanent deficit as a result of an entirely treatable lesion (what I would later learn of was the implication that there could also possibly be an untreatable lesion.  We'll just call that topic Voldemort.)

We got the MRI.  I can't even get into the details of the day.  I don't really care to remember them anyway.  I do remember that two of my attendings and a neuroradiologist were all over us, waiting to review her images as soon as they were done.  Maureen coming to tell us the scan was normal.  No Chiari.  No nothing.  Thank GOD.  Do I have to keep the neurology appointment, I asked?  Since her imaging was normal, what on earth could they possibly tell me?  My now-adored attending (I mostly adored her before.  Now I would give pedicures to the homeless if she told me to) gave me the same goddamn smile and told me yes, I needed to see neurology.

This morning at work, Maureen and I were rehashing last friday's events, the fears we both had that went unnamed.  How completely relieved she was when it was all done and normal.  How it was all a bad memory.  I said again that I wanted to figure out a way to get out of seeing neurology. What on earth could they tell me?

And then two hours later, the page.  Gracie had a seizure.  The drive to the suburban hospital where the ambulance took her (everyone should have a Maureen in their lives.  Seriously.)  Another attending going over Grace's MRI with a fine-tooth comb, and calling Maureen to tell her it was absolutely stone-cold normal.  Finding Gracie post-ictal in Stephen's arms, watching her gradually come back to herself.  Prancing out of the room in nothing but her underpants, shouting, "I happa go to work now!  Over DERE!!!"  Katie charming the entire ER staff.  Normal labs, and an EEG added to the now-clearly-necessary neurology appointment on wednesday.

Common things are common.  But between now and wednesday, all I can think is, somebody has to be the zebra.


Megan Elise said...

Sounds like you've got some of the best people around you to help you figure this out. Gracie, and your family will be in my prayers - hoping and praying that you get simple and relieving answers soon.

Megan M said...

Uggg...for you and G.....just ugg...