Dylan V and his Jaw Distraction
Dylan is Kevin V’s son (and my first ever nephew!). Dylan was born with with Pierre Robin syndrome that left his chin pushed back and cutting off his airway, requiring a tracheotomy, a feeding tube, and lots of other difficulties.
After a trying two years, Dylan just got his surgery to fix his jaw. Or, rather, to start fixing his jaw. They’re inserting rods into the bones that are extended slightly every day to stretch out the jaw bones. Kev set up a blog, http://www.kjvis.blogspot.com/, to report on and monitor his progress. There’s also lots more details on Dylan’s condition and the surgery itself. So whether you are at all interested in the V family, or just want to watch SCIENCE in action, feel free to check it out. I got Kev’s OK to post this for everyone.
Also, I’ve already made the “it doesn’t look very distracting” joke, so don’t bother.
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For anyone even remotely interested, check out the scars and bolts in the most recent (day 5) photos. It’s insane. They opened his jaw, inserted steel rods in his bones and bolts out of his face and he’s barely even swollen 5 days later.
SCIENCE!!!
I was just telling Hutch via instant messaging (which is like this, but faster, and with a search function [sorta]) how wild this is, and that though I readily admit I’ve seen the kid in person once… some telecomm conference in Dallas, he bought me drinks… it seems to me like there’s a pretty significant difference in the Day 5 vs. Pre-op picture.
Unless of course he was just making a face that I wouldn’t know to recognize.
Thanks for sharing this, Kev. It’s incredible.
We can’t tell ourselves whether the difference is actual or if it’s just some residual puffiness in his face. It will definitely be interesting to see how it compares on day 10 or day 20 (if it has to go that far). I’m just hoping he doesn’t look too much like a Jay Leno/Mac Tonight hybrid.
Also, here’s an even more interesting link to a rare surgery on a kid born without a chin or a jaw. The doctor who did Dylan’s surgery was on the team that did this.
http://www.foxnews.com/story/0,2933,279034,00.html
Maybe you’ll get luckyand he’ll turn out like Bruce Campbell.
I really want all his operations to be done and for him to not need anything done after the age of 4 or 5. However, if a doctor recommends a gun or a saw hand operation to go with the jutting lower jaw then I don’t think I’d let him say no to that.
3 millimeters a day is so fast! that’s incredible. he seems like a happy little trooper though.
It’s actually 1 millimeter a day. We turn the screws 1 full turn 3 times a day and that amounts to 1 mm a day.
I’ve definitely had to get used to the metric system with all his medical issues since that’s what everyone uses in medical terminology.
John said:Maybe you’ll get lucky and he’ll turn out like Bruce Campbell.
If he does, is it too late for me?
I’m not sure this is appropriate for bed time stories, but…
Kevin said:It’s actually 1 millimeter a day. We turn the screws 1 full turn 3 times a day and that amounts to 1 mm a day.
I’ve definitely had to get used to the metric system with all his medical issues since that’s what everyone uses in medical terminology.
hmmm, ok. it’s a little weird from your description. “3 complete 360 degree turns of the device, 3 times a day. 3 turns of the device equal 1 full millimeter.”
it reads like 3 turns at once, 3 times a day. unless i am over-thinking it. either way, even 1 mm per day seems fast.
i got used to the metric thing when i was stretching my ears a bit. and i did those about 1-1.5mm every few months.
Wow, this is incredible! Best of luck to your family with all of this Kevin, but it seems like its going super well so far.
I do agree with Mandy that 1 mm a day seems fast, but it’s more like OMG WOWZ THE HUMAN BODY IS SO ADAPTABLE!!!1 than anything close to second guessing someone who went to school twice as long as I did, and paid attention to boot.
Simply incredible.
that’s exactly what i meant, sammy. it’s fast in a very fascinating way.
I didn’t mean to imply you meant anything else other than the meaning to which you actually meant. That’s just what I meant when I agreed, without meaning you meant something else.
Hey. Hey.
Frankenstein for Halloween.
i saw something on tv once where they did this for a kid! it was wacky-cool. the bones just rebuild!
i hope everything goes well for all of you!!
Do the Doctors have a time-line for all of this? I wonder when this procedure was first done, it’s amazing how far things have come.
i know, i just meant to set anyone else straight who thought that i meant anything else other than i what i really meant. plus i like the word “fascinating”.
Matthew-
The doctor anticipates that he’ll need an extra 15-20 millimeters. As I think I mentioned on the site, they usually overcorrect, since with this condition the lower jaw tends to grow slower than the rest of the skull. So this way he’s not back to where he was in 5 or 6 years.
Actually this procedure was only first done on the cranial/facial bones since the 90’s. Although the same medical basis has been used to extend leg bones in dwarves for much longer than that.
Apparently when they do this later in life it has a lower success rate though, particularly in the face because as an infant/toddler the body is still in growth mode so the bone fills in faster and more effectively than it does when one is an adult and already grown.
Oh, and I did change the description of the turns since reading what Mandy quoted, it was confusing and not correct.
This is incredible stuff. I give you guys major kudos for having the stomach to have to do the turns yourself. I guess after dealing with a trach, though, not much will phase you. It just blows my mind that this can be done!
Oh, and Kevin, Hutch showed me pictures of Dylan on his iPhone a little while back. You may have the cutest little kid in the world. I don’t like babies so much, but he’s just ridiculously adorable.
Good luck with everything!
It’s funny you mention having the stomach to do some of these things. Up until maybe 6 months ago, I had to leave the room every time they suctioned out his trache. I have a very vivid imagination and it would make me cough and squirm every time. Which is absurd cause HE’S the one with the tube in his neck.
Basically, I’m a giant sissy.
Don’t feel bad. I was actually pre-med for the vast majority of my college life, and I’ve disected a ridiculous amount of things that I will not mention for the sake of weak stomachs. However, when my old cat had kidney failure, and I had to give her an IV, it was awful. I mean, I was full steam to do orthopedics, I was going to cut people for a living. I guess I made the right choice to leave it.
I think there’s just a different mindset when what you’re dealing with is living.
Julia said:However, when my old cat had kidney failure, and I had to give her an IV, it was awful.
I’m actually really fascinated by this phenomenon. It doesn’t seem to jive too well with the theory of evolution that so many people would freak out when confronted with serious injuries and blood and shit. I mean, you have your random guy that is capable of sawing his own leg off to get out from under a tree, and then you have Hutch. Wouldn’t it make sense for all of us to be wired like the rugged lumberjack guy?
Kevin, best of luck with what looks like a really advanced and awesome procedure.
Jay said: I mean, you have your random guy that is capable of sawing his own leg off to get out from under a tree, and then you have Hutch.
Bahahahahahaha, Guess who’s not getting naturally selected? Sissy!
It’s a testament to John’s Unclehood (Uncleness? Uncleosity?) that he’s been able to overcome his squeamishness because there’s a lot to be squeamish about when it comes to Dylan’s medical junk.
Id I were Dylan, I’d be a little squeamish about being so close to that beard.
Hutch <3.
Actually when my daughter was much younger and John would have more frequent non-beard phases, her fear or lack of fear ran almost exclusively parallel to his facial hair or lack thereof.
C’mon, lookit his face. Kid loves me.
He’s two, John. He hasn’t met that many people yet.
Also, the new pictures look good, Kev.
pics do look great! i like following this day to day. cutest kid i’ve ever seen – besides my own niece. :P.
by the way, i’m sure most of you thought this, but my new band name is Christina P and Her Jaw Distraction.
I hadn’t even thought of that aspect but Jaw Distraction is definitely a phenomenal band name.
When you put a girls name in front of it like that, Christina, it sounds like a euphemism for a blow job.
“Christina? Yeah. She gives one hell of a jaw distraction.”
it sounds like it speaks to your ability to handle giant peni.
im okay with all of that.
Kev, Dylan’s starting to look like John Cusack. The top pic on day 12 is uncanny.
You’re uncanny.
Cusak? Really? I’d be fine with that, but I don’t see it so much. I just want his face to be even. I’m worried the internal device has effed up in some way. It looks better than it did, and his doctor doesn’t seem overly concerned when we talk or e-mail him, but then again he’s on vacation and may just not want to deal with it. We’ll see on Tuesday. I’m hoping he doesn’t have to cut him open again and fix anything, but if he does I’m hoping whatever it is, is easy enough to correct.
It looks like it’s just swelling on the left side, though, right? I mean, can you feel if the bone is longer or anything?
It’s actually not swelling. It’s the device on that side pushing out a little. The doctor said it’s not abnormal for the sides to be a little off. I’m more thinking that the device has become undone. I don’t know. My normal personality is to worry and overthink everything and assume the worst, so I’m doing that. On the other hand the doctor doesn’t seem worried. But again, he’s on vacation so even if something was wrong I’m not sure what could be done about it since it’s not like it’s a simple operation that anyone can perform. It’s pretty much his specialty. I’m hopeful that we didn’t start noticing it until like day 9 or the turning, and it clearly does seem like the distraction itself worked. I think if anything we may just need to maneuver the one side a little more or less.
Hey, Kevin…can you give us an update? How’s he doing?
He’s doing well. Nothing new since the last post on the blog. He’s scheduled to get the hardware removed on November 5th. The doctor took off the longer portion of the screws that were sticking out the back of his ears so now there’s one less thing for him to fiddle with. Other than that, it’s business as usual I guess for the next few weeks.
Great to hear! I was glued to the blog. Aside from the daily pictures of him being painfully adorable, this was really incredible to watch.