Friday, September 14, 2012

September Limbo

Yep, it's September, the month of doom around here. The month where Kingsley freaks us out and we get bad news. It's kind of getting creepy, if I'm being honest. September 1st hit and I was reminded that my nieces birthday was the next day. It hit me like a ton of bricks. Pre-Diagnosis Day. The day we got the results of the blood test that said something was wrong. I stopped my brain from going down there. It's been three years.

September curse is in my head. So what if September 2009 was diagnosis month, September 2010 was syrinx-not-gonna-walk month, September 2011 was deja-vu-scare-month? Don't get upset about stuff that wasn't happening.

The days ticked by.  The curse loomed.

OK, I'll cut to the chase. Strange things are happening and I'm about 5 minutes from rushing him to the ER at any given point. I don't know if something is going on with his shunt or if I'm over-thinking. Either way, he's not himself and something really is going on.

Right now I'm in wait-and-see mode (which I now embrace, for those of you on the early end of this SB journey ;)). He's been grouchier and grouchier, eating less and less since the girls went to school. I have been excusing it as 'he's two' and 'he misses his sisters' and 'his entire world just flipped'.  We've also had people in our house doing renovations all week, so it's been chaos. Totally justifiable to be grouchy.

Then he threw up (because he was crying and upset).

Then he threw up, again (for no apparent reason).

So, what's a shunt-fearing mama to do? I called the paediatrician and the neuro nurse.

Kingsley has had two days of total lethargy. He eats very little and didn't drink for nearly 24 hours (he is ok with that now). He doesn't have a fever, isn't fussy like he's in pain, won't tell me something hurts, no sign of UTI, ear infection, his eyes track normally and open fully (when he can keep them open), and his nose is not running at all. Just wants to sleep or snuggle all day.

I'm giving him 18 more hours and then we're trucking it to the ER if he doesn't get worse or better.

Limbo is a blissful place to be, in a way. Shunt malfunction is not fun. That means surgery, a couple days in the hospital and my poor kids having even more trouble adjusting to September this year. There's always the chance that this is related to Chiari in some way I don't know about, which is far worse. Then there's a chance that he'll wake up ravenous and ready to play. Or with a cold. Either way, we'll get through it like we always do.

Tomorrow is the true Diagnosis Day anniversary, which is still far and away the worst day of my entire life. Whatever this September brings, we can handle it.


  1. Oh, crap. We are going to have to take this month off your calendar. I hope it's a cold. I know you can handle whatever it is, and so can King, but I pray it's a cold and you will soon sigh with relief.

  2. Hang in there. I hope he's feeling better soon.

    We're having to repeat a bunch of tests done exactly a year a go and going back to extra specialists we thought we were done with... The wait and see never really goes away!

  3. I hope everything is fine, and it's just a "regular" illness like the flu, and quickly passes. (Who ever wishes for someone to have the flu, right?!) I hope this September ends up breaking the September curse for you after all. Fingers crossed.
    (The little Kingsley faces that show up in the "you might also like" in the bottom of your post make me smile.)

  4. Thinking of you guys! I love sweet Kingsley and your family. Praying that King snaps out of this soon. XO, Ang

  5. I hope the little guy is feeling better. We had the same scare with Caitlin last week. She couldn't stay awake and when she did she was grumpy, not eating and vomited and kept saying her head hurt. I was ready for taking her to hospital that evening when she suddenly perked up, and the next day she was totally fine again. It's so scary & so hard to guess if its the shunt or not!! Kingsley's shunt has worked perfectly so far, i'm sure its fine :) Fingers crossed it's just a virus that clears up quickly!!xo

  6. oh man, i didn't realize today was diagnosis day when we spoke. darn september...its nearly over..we're over the hump.....


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