Sagi-say what?

 
I learned a big new word yesterday, so I’m just gonna throw it out there for ya: SAGITTAL SYNOSTOSIS. I learned what it means, and how to actually pronounce it, so if you want to hear me say it correctly call me within the next 3 days because after that I’ll forget.
 
I will insert the obligatory paragraph about SAGITTAL SYNOSTOSIS, Merrick’s official diagnosis, here, and beware that I am no doctor. Not even close. But I did own a white coat once. Okay, no I didn’t. Brace yourselves:
 
SAGITTAL SYNOSTOSIS, is where the seam up the middle of the skull closes up too early. It’s actually not uncommon. The brain cannot spread out, so it grows in any direction it can. It causes the kid’s head to be long from front to back, and narrow from ear to ear. It can also cause the kid’s forehead to protrude somewhat. Pretty funky. Supposedly this condition does not cause the kid any pain, which I tend to believe because Merrick is significantly less fussy than my other "normal" headed children were. He’s just as happy as they come. The only thing, really, that might happen from this is that, like I mentioned in an earlier post, he runs the risk of people shouting "Hammerhead!" or "Freak!" or "Keep it in the circus!" as he walks by. And that is where the surgery comes in.
 
Merrick’s appointment with the neuro (nuero?) surgeon went well. We definitely got all our questions (2 pages’ worth) answered and then some. Our doctor sure didn’t have much of a personality, but then again, if he’s going to be operating on my infant son’s skull, the more boring he is, the better. He was patient, and kind, and he assured us that while this was a serious surgery, he’s generally used to working with much more complicated cases, which I assumed anyway. He went over the problem (closed skull), our options (surgery, or, surgery), the surgery (all the gory details), the risks (blood loss) and complications he’s seen, and the recovery time involved (3 or 4 nights in the hospital, 2 weeks of stitches, no helmet. Damn.)
 
He showed us Merrick’s CAT scan pictures, and man, that’s a solid hunk of skull if I’ve ever seen one. In a way, the pictures set our mind at ease, as if we needed some sort of visual "proof"; something more concrete to help us better accept what’s going on.
 
We discussed the endoscopic option, but Dr. Personality wasn’t a big fan of it. There’s an even higher risk of blood loss associated with this type of surgery (apparently there’s a huge honkin’ vein somewhere up there that is more likely to be damaged). With the endoscopic surgery Merrick would be in a helmet for a year, which I didn’t mind. I’d actually gotten a little excited about it with plans for a really kick-ass helmet, but it won’t be needed at all going the traditional route.
 
We’ll be contacted sometime within the week on an actual surgery date; we have a rough time frame of anywhere from mid-September to early October, so we’re a little more at ease as far as being able to make plans in advance and stuff.
 
That’s about all I can remember without consulting my cheat sheet. We’ve got a while to wait, but I feel like we’ll be able to sort of move on with our lives a little. Get Caleb focused on finding some kind of work, get the girls in school…now, if I can just manage to keep everybody healthy in the weeks leading up to his surgery, we’ll be all set.
 
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About Toni

Mom. Wife. Artist. I take care of the kids and pretend to clean sometimes. I can cook spagetti and I have never been arrested. View all posts by Toni

3 responses to “Sagi-say what?

  • miranda

    Sheesh, even I feel better about it now! I’m glad that the situation is moving along and getting "easier" to deal with. This will all be in the past in no time and you’ll be busy figuring out which adorable Halloween costume your boy will wear. :)All my best, Toni!!

  • Bev

    Toni, I am so thankful that you got all your questions answered and that it appears that Merrick’s case is not as bad as what it could have been.  A competent and kind doctor is a God-send.  What a mouthful that diagnosis is though.  I worked in medical for a while and it still took me a few moments to sound it out.  By the time Merrick’s operation is over, I bet you are going to be an EXPERT on this condition. 
     
    Still saying my prayers for you all and especially little Merrick.    Hugs to you!
     
    BBB 

  • barnyardmama

    Sounds good.  Those neurosurgeons (I can never spell that, but I think you got it right the first time) see some incredible stuff.  Even Charlie’s sugergy, which involves placing a catheter into his brain, is simple stuff for these guys.  Other kinds of hydrocephalus involve cutting into the brain to install multiple shunts and we won’t even go into the kind of stuff they have to do when children have brain tumors.  The kind of stuff that rocks our world is a day in the park.
     
    I was the exact same way about the pictures.  I’m looking at CT scans as if I have any idea what they SHOULD look like, but it did make me feel like I was doing the right thing.  Again, like I had a choice in the matter. 
     
    School!  I miss school, really I do.  Life moves quickly, though, and I’m starting to see that one day I may get back in the classroom.
     
    KM 

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