Wednesday, October 17, 2012

16/31 - 8643 times, Part II

Part I is here.  Or a whopping two days ago if you want to use that little 'older' button.

Part I also took a long detour down the memory lane of prior procedures.  Good times.  Anywhoo.... one fine September morning we visited the ENT who pronounced her tubes glorious and we got an old fashioned hearing test which my daughter rocked.  Then we went down to Radiology where my suddenly very grown up girl sat calmly, one leg crossed, flipping thru a magazine.

Well, she did for about 10 minutes or so.  Then we played peek-a-boo.

Children with Down syndrome are at higher risk for AtlantoAxial Instability, or AAI.  There are links here and here that explain it but in short, the ligaments holding the cervical vertebrae in place can be too loose, increasing the risk that those same vertebrae could smoosh her spinal cord.  Smooshy hugs are good.  Smooshed spinal cords are bad.  Just in case that was unclear to anyone.

There's apparently a little bit of controversy about the necessity of screening since AAI is fairly rare, but my pediatrician is wonderful, I'm of the test for it school, since we are the medical 1%-ers (sadly not the fiscal ones), and I don't like surprises.

When done, it's usually around age 3.  We had it done then too but there was this thing that the radiologist wasn't sure about.  So ensued a fiasco getting the films copied and off to Children's for a second reading (I got a very cool look at her insides though).  Children's thought The Girl's neck was more or less fine ("grossly normal" in medi-speak, which never fails to crack me up), but they did not have kind words about the quality of the films or the one missing angle that someone forgot to shoot, and recommended the films be re-done.

Which is has taken me 9 months to do.  I am an awesome parent.  But I was reassured by "grossly normal" and, as I mentioned in Part I, running up to Children's Hospital is no small task.  We've been there since, of course, but the timing never worked out (and/or we'd forget.  Like I said, awesome parenting).  Also, The Girl's activity level hardly suggests neck trouble.

But we finally got the films re-shot, went off for our picnic and playtime, where she climbed 10' into the air, then we landed in the pediatrician's office that afternoon.  The films had already been read and the report faxed over, because Children's Hospital is amazing.

You know when positive findings aren't actually positive?  They thought the gap in her neck was over the clinically critical 5mm threshold.  I nearly hyperventilated in the ped's office.  She'd just been climbing!  She could have fallen!  You know the experts you never want to need?  Oncologists, Tropical disease experts... neurosurgeons.  We now have our very own neurosurgeon.  Yeah us.

In that moment, and on the drive home, I will tell you I was in a very unhappy place.  I know it was not cancer, not fatal, not the end of the world.  I know this.  But I know something of spinal fusions (work, not personally) and they are a really big frikkin' deal, both long and short term.  What's more, I understood that children with fusions get halos for 6 months.  How in the effing hell are we going to manage that?  It's not like we can send her to daycare in a halo.  And did I mention what a little monkey she is?  She climbs everything.  The chances of her not dislodging all that cervical hardware and paralyzing herself were non-existant.

There was also that sickly falling feeling.  All of my major life events have struck without warning - like sniper shots on the highway.  Losing Brennan within sight of his due date to a nigh unheard of cord accident.  The Girl's diagnosis coming after a negative quad screen and three (THREE!) clean Level II fancy high risk ultrasounds.  I'm not exactly naive.  I am paid professionally to contemplate things gone wrong & assign monetary value to tragedy.  I take precautions.  Read up on risks.  But holy cripes, I still get knocked down.  Her neck had been (mostly) cleared! 

It took two weeks to get in to see the neurosurgeon.  Two weeks and twenty minutes - there is a three floor difference between neurology and neurosurgery.  *Ahem*  But he remeasured the films and decided the gap was a completely safe 4.5mm.  I KNOW, RIGHT?  So much adrenaline and anxiety spilled for...  nothing.  Well, spilled for 0.5mm.  Which is tiny!  I felt the solid ground returning under my feet.  I chuckled at my own over-reaction.

Except he was still talking, "But I'm glad you came in today.  Do you see this area right here?  C2-C3?".

Why yes, Doctor, I do see that huge gap and completely crooked spot on my daughter's spine.  The spot that hadn't been mentioned in the initial radiology report.  How very observant you are.  

Whoosh!  There went the floor again.

He said he was going to dig up the first set of films and have someone else look at all of them.  We might need a MRI.  I said I would have no idea if The Girl was experiencing symptoms of spinal cord compression.  She'll sign boo-boo if she scrapes something, but neither of us know the signs for "Mommy, my legs are tingling and I can't feel my pinkie finger."

This was on a Friday.  He said he'd call on Monday.  We left and I immediately called her heart surgeon because I'd also told the neuro I didn't think she could get a MRI because of the wires holding her chest together.  Things you never wanted to do:  Call the heart surgeon to see if the neurosurgeon can proceed.  Turns out?  The wires are titanium and titanium is MRI compatible.

As completely ridiculous as it sounds, when the cardiac nurse called to tell me this, that one little detail just broke me.  Tears & sniffles at my desk.  It was probably just stress &/or relief that something went right but how very, very thoughtful of them.  What a lovely bit of foresight and planning.  If the medical community can get that right, then we will be OK.

The neuro's nurse ended up calling Tuesday morning:  pseudo-subluxation at C2-3.  Which is apparently quite common.  No MRI.  Just repeat films next year.  *Phew!*

I know in Part 1 I tried to stress how generally healthy my girl is.  I'd hate for an expectant mom to read this and think we spend all our spare time in the hospital.  I also know this was the most anti-climatic post in the history of the internet.  She's fine!  I don't know if my reaction is normal - fusions ARE a big deal, if I'm veering off into tinfoil hat paranoia, or if this is a sign of some post-traumatic schtick that I have to go thru every time I have to make a follow up phone call.  We have not quite reached 8643 follow up phones calls, but I'm hoping I'll be all better by then.  Good times, indeed.

Relax, mom. Have a cookie.


  1. Oh yikes. I've been avoiding the xrays because I don't want to know ;) But then again. Max is only 3 1/2... we're not that overdue.

  2. I enjoyed your post very much and can really relate to the floor going out from under your feet. We have seven kids with Downs and the last, of course, had AAI. His doc was Dr. Birknes who is a very nice man and we did have the surgery. I was amazed at how well Phil did with the halo as he is a very active boy. I pray your little one continues to grow beautifully.

  3. I think your reaction was perfectly normal! Kayla had to have those xrays twice. The first time we tried at 3 yrs and while they managed to get some of the shots, a couple were slightly blurry because she wasn't completely still. We had them redone 2 yrs ago, when she was 7. So, we waited 4 yrs. I guess we were never told when we should go back and try again and we just waited until we thought she was old enough to really be still. Anyway, glad everything is fine with your girl!

  4. BEST anti-climatic post, EVER.

    And I'm with you on the tinfoil hat paranoia...we still have the L word lurking in the back of our minds so everytime Miss B sniffles or seems extra tired I want to take her in for a CBC. Dr. C has to talk me down from the ledge and remind me she just needs a nap.

  5. Girl, I was panicking right along with you! How true about the communication barriers that we have with our kiddos "Mommy, my legs are tingling and I can't feel my pinkie finger." Yeah, I don't know the signs for that one either nor can I imagine a little kid actually being able to understand tingling vs. pain vs. lack of feeling.

    I am also all about the screening for AAI even though routine screening is somewhat controversial. Seriously, I had a very low risk of having a child with Ds and yet, here I am with my Ellie Bear! So when people say things like "The chances of this happening are low", I tell them so what? so was our chance for the a daughter with Ds. Screen away!