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Author Topic: Riley's brain surgery update, 2 years later  (Read 8051 times)
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lildrgn
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« on: November 02, 2008, 04:26:26 PM »

Tru dat.

My son Riley is 4. In the past 4 years, he's grown from a needy little mama's boy into a, well, needy little mama's boy (in a good way). He and I have had epic battles, as evidenced by a thread on this very site. Over the past year or so, though, he has matured quite a bit. The epic battles are, thankfully, a thing of the past and he and I get along quite well now.

Back then, we didn't think anything of his behavior, other than, WTF? He wouldn't sleep well at night, he talked funny, he made a mess at meals, and he seemed to march to the beat of his own drummer. The thing was, we just figured he was what he was and would grow up to be fine.

Certain things he did were weird, however. As his teeth grew in, he drooled, of course. After his teeth all came in, he continued to drool. No big deal, right? He'd grow out of it, right? Not really. We had him checked out and the doctors concluded that his tonsils were too big and limiting his swallowing abilities, so the tonsils were removed. That seemed to help things along; he was swallowing better, but still having issues. Further studies indicated he was having issues with liquids. He'd silently aspirate (the liquid would get caught in his throat {think frog in throat}) and after time, he'd possibly get an infection. The doctors recommended us mixing anything he'd drink with something called Simply Thick, a gel-like substance that would thicken his drinks. As a result, anywhere we go we have to carry around a sippy cup of drink mixed with ST. It's a pain, but it's what we do.

Rye also had trouble with things like going down stairs. Coming up was no problem. To go down, he could walk, but it'd be both feet on each step at a time. At age 4 now, it's the same. He can go one foot at a time, but it's awkward and slow. He has trouble with fine motor motions, things like scissors or writing utensils or eating are usable/doable, but not as adeptly as a 4yo should.

With all these issues, the doctors kept telling us he'd grow out of it. That after time, he'd be "normal" and we'd be fine. Well, my wife kept on it and going to different specialists and therapists. After one appointment, we were recommended to get Riley an MRI. The ENTs and swallowing specialists were getting us nowhere and with all the medical issues (aspirating, numerous sinus/ear infections, etc) and life issues (inability to simply drink from a water fountain, difficulty eating neatly, etc), we wanted to find out just was was affecting Riley.

In early June, we had an MRI done. A few days later, the pediatrician called and told us Riley had something called Chiari Malformation. We found out on a road trip down to California and I wrote about it in more detail here. Anyway, what Chiari means, in a nutshell, is that Riley's brain is too big for his head. The neurosurgeon we've consulted with said it's like having a size 10 foot in a size 9 shoe.

Some symptoms of Chiari include loss of fine motor skills (check), difficulty swallowing (check), frequent gagging and choking (check), among other things. Riley's brain is blocking the flow of cerebro-spinal fluid from the brain to the body. As a result, he's had syrinxes (cysts) form around his spine, which may or may not be pressing on certain areas that are causing his symptoms. You mess with the spine, you're going to affect other parts of your body.

In meeting with the neurosurgeon, he said that though the Chiari wasn't life threatening, it could potentially impact us dramatically. He said that Rye would be in a wheelchair if we didn't do something about it. Riley has 5 syrinxes along his spine and they will not dissipate unless we're able to improve the flow of his CSF. The doctor said Riley's case of CM was pretty severe, so, after deliberation, we decided to proceed with the surgery.

The past few months have consisted of us keeping a close eye on Rye. We've had to keep him from doing anything tumbling-related. We've had to make sure he's not bonking his head on anything. That hasn't been too hard, but it got hard when he'd complain that he could'nt do anything (Haley would go to gymnastics and Rye could only watch). We keep telling ourselves that this is a bump in the road and that in 6 months, he'll be healed up and working on the skills he should have if he didn't have CM.

Nevertheless, the thought of my little dude having brain surgery is a little unnerving. Obviously there are risks. Death, paralysis, other unmentionables. But we're looking at the big picture. His quality of life will improve. He'll be able to just "be". Luckily, he's pretty clueless about the situation; he's lived it his whole life, after all. He knows of surgery, he knows he's going to the hospital. He knows he has issues, but he's had such a great attitude about it all.

Haley's a little stressed as well, we think. First with her grandfather's death, then school starting and now her brother's surgery, well, she's kind of a mess at times. It's so hard to be patient with her when she's being bratty, but it's just something I need to work on.

Marci, my wife, has been driving herself to the point of her back almost going out. She's been spraying Lysol all over the house (we have to keep Riley from getting sick, otherwise they'll postpone the surgery), taking him to all his appointments, etc. She's keeping it together, but it's been tough.

The in-laws are coming in today for a few weeks to help while Marci and I are at the hospital. They'll keep an eye on Haley and just be here for moral support. Riley will be in the hospital for about a week. He'll be in the ICU for 2 days or so, then a few days more in recovery. After that, it's back home where our duty is to keep him as still as possible. We're gonna inundate him with TV, movies and, of course, video games!

Through it all, I've been doing ok. No meltdowns or anything, though this weekend, I've been a little short of patience. It has been a tough week, in my defense. My work is slow; this economy, cliche as it may seem, is really affecting it (sales). On Friday, one of my employees resigned. Not a total surprise, but still a shock. As some of you know, my dad died in September and though the shock and grief of that have passed, it's still on my mind a lot and quite a bummer. Add in that the in-laws will be here and that my m-i-l wants to horn in on our pre-surgery appointment (WTF) on Monday, and, well, there's a little stress.

Things could be worse, I suppose, but still, one never wants to take a kid to surgery. I'm confident everything will be fine, but man, brain surgery? That in and of itself is enough to freak anyone out.

Anyway, if you can, keep us in your thoughts. You guys were a great help when Dad passed away, in terms of helping me get through it. I don't think this will be as dramatic, but it's no less stressful and any support or humor or both you can lend me will be appreciated.

Here's Rye:

« Last Edit: November 05, 2010, 04:09:14 PM by lildrgn » Logged

Gratch
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« Reply #1 on: November 02, 2008, 04:58:33 PM »

Good luck man, Mrs. Gratch and I will be sending plenty of positive vibes your way.
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« Reply #2 on: November 02, 2008, 05:06:08 PM »

Good luck to you and your family.

gellar
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Devil
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« Reply #3 on: November 02, 2008, 05:47:31 PM »

All the best to you and the family!
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kratz
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« Reply #4 on: November 02, 2008, 06:01:36 PM »

A rocky year, isn't it?

Sounds like some nerve wracking stuff to go through with your little guy.  I'm sure everything will go just perfectly, and he's a kid... so he'll bounce back super fast!  Keep yer chin up.
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« Reply #5 on: November 02, 2008, 06:29:22 PM »

Best to you and your little dude.  Be sure to update us on how it went for him.
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« Reply #6 on: November 02, 2008, 07:06:01 PM »

Quote from: warning on November 02, 2008, 06:29:22 PM

Best to you and your little dude.  Be sure to update us on how it went for him.

Yes, please update us on how the surgery went.  I wish and hope the best for him!
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Starshifter
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« Reply #7 on: November 02, 2008, 07:37:15 PM »

I could never imagine going through something like this with my kids.

My thoughts are with you, the family and Riley.

It WILL work out.  Keep us updated.
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Ironrod
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« Reply #8 on: November 02, 2008, 09:22:17 PM »

I wish you the best, even though I'm disappointed that I can't vote on it.
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rickfc
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« Reply #9 on: November 02, 2008, 09:38:43 PM »

Good luck, lildrgn.  I feel for you, man.  I hope everything turns out ok.
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Huw the Poo
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« Reply #10 on: November 02, 2008, 09:45:59 PM »

That's harsh, you and your family don't deserve this.  I'll be thinking of you all on the day, lildrgn.

For what it's worth, personally I think that being positive really helps.  Don't dwell on what could go wrong, instead dwell on how much better your lives are going to be after the successful surgery. smile
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« Reply #11 on: November 02, 2008, 09:59:41 PM »

I hope the best for your son and the rest of your family.  Hopefully, it will be a cool story he can tell to impress the ladies in the future.
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lildrgn
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« Reply #12 on: November 02, 2008, 10:24:58 PM »

Quote from: Huw the Poo on November 02, 2008, 09:45:59 PM

That's harsh, you and your family don't deserve this.  I'll be thinking of you all on the day, lildrgn.

For what it's worth, personally I think that being positive really helps.  Don't dwell on what could go wrong, instead dwell on how much better your lives are going to be after the successful surgery. smile

Yeah, I'm typically a non-negative person. The big kicker is the word "brain" in the phrase "brain surgery". If it was just "surgery", I'd be better with it. But, as always, thanks for your thoughts and I will be keeping everyone posted.

For anyone interested, we have a blog for Riley here: linky

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« Reply #13 on: November 02, 2008, 11:53:32 PM »

I hope everything goes perfectly! I'll listen to a Rush song to send some good luck your way.
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« Reply #14 on: November 03, 2008, 12:26:19 AM »

Best wishes to you & your family, lildrgn.

Remember, those surgeons are absolutely brilliant, and know what they're doing! And kids are tough. He'll beat this!

And btw, Rye is one cute kid.

Good luck!
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« Reply #15 on: November 03, 2008, 12:29:46 AM »

My thoughts and prayers are with your family.
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lildrgn
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« Reply #16 on: November 03, 2008, 01:00:40 AM »

I just cut off all of Riley's hair. With a #2. Buzz-cut. He's so brave! He doesn't seem affected at all, hamming it up for us as I was buzzing away.

Me, on the other hand, was a little choked up. I know this is going down on Tuesday, but it's more concrete now. It's a trip looking at the countdown timer and seeing 2 days left on it.

For some people, 11/4 is going to be an important day. For our family, it'll be the most important day of our lives.

(was that melodramatic?)
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« Reply #17 on: November 03, 2008, 01:27:56 AM »

Quote from: lildrgn on November 03, 2008, 01:00:40 AM

(was that melodramatic?)
Not at all.

I'll be thinking of you guys too, with all the positive mojo I've got.

I think you have not only a brave son, but an entire family (yourself included).
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« Reply #18 on: November 03, 2008, 01:36:04 AM »

I don't typically post - Lurker syndrome.

But good luck to your boy. I wish you and your family the best.
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« Reply #19 on: November 03, 2008, 01:53:22 AM »

Check out the big brain on Riley!  Best of luck to you and yours. I'll be looking for the update with greater anticipation than rampant election speculation.
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« Reply #20 on: November 03, 2008, 02:02:50 AM »

You and your family will be in our prayers and on Tuesday best wishes.
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« Reply #21 on: November 03, 2008, 12:32:32 PM »

Good luck lildrgn. My brother had emergency brain surgery due to an aneurysm, so I feel your pain. He made it 100% and I'm sure your little guy will pull through!
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« Reply #22 on: November 03, 2008, 12:53:10 PM »

I have nothing but the best wishes for you, you're family, the surgeon, the nurses, and everyone else involved in the big day.

I'll be sure to have you all in my thoughts.
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« Reply #23 on: November 03, 2008, 02:45:47 PM »

My thoughts are with you. He looks like a great kid. I have a 4 year old boy as well. I'm sure he's going to do great.
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« Reply #24 on: November 03, 2008, 04:38:12 PM »


Good luck to your little buddy.
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« Reply #25 on: November 03, 2008, 05:04:37 PM »

Good luck tomorrow, sending postive thoughts and prayers your way.
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« Reply #26 on: November 03, 2008, 05:27:48 PM »

Keep us update because, as you can see, we're all pullin' for ya!

(although I have no doubt in my mind that everything will be fine and the little guy will be tormenting you for years and years and years....  icon_biggrin)
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« Reply #27 on: November 03, 2008, 05:37:20 PM »

Man that's a hard pill to swallow; you're doing an excellent job Dad.

Keep up your spirits; the last thing you want is him feeling your fears. Be strong and be confident for him; he needs to feel your strength of resolve right now. biggrin

Best of luck, keep us updated!

(and yeah, I did drop the pun on purpose... you asked for humour above slywink)
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lildrgn
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« Reply #28 on: November 03, 2008, 06:35:37 PM »

WTF.

In my real life, I run my family business. Dad started in 1981 and it's been going ever since. I officially took it over 7/07 and we've been puttering along. Not making huge $$$, but enough to live off of. Friday, one guy "resigned" on me. It was ok, as he was kind of a problem child. We'd be fine without him.

Today, another guy left me. So that leaves me with one technician (down from 3), myself, and another guy.

I'm pretty sure we can handle it. We do computer sales and repair. But the lack of manpower is a little disconcerting. Especially considering the fucking timing of it all.

Goddammit.
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« Reply #29 on: November 03, 2008, 06:49:52 PM »

Good luck to one and all tomorrow.
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« Reply #30 on: November 03, 2008, 06:50:39 PM »

Quote from: lildrgn on November 03, 2008, 06:35:37 PM

WTF.

In my real life, I run my family business. Dad started in 1981 and it's been going ever since. I officially took it over 7/07 and we've been puttering along. Not making huge $$$, but enough to live off of. Friday, one guy "resigned" on me. It was ok, as he was kind of a problem child. We'd be fine without him.

Today, another guy left me. So that leaves me with one technician (down from 3), myself, and another guy.

I'm pretty sure we can handle it. We do computer sales and repair. But the lack of manpower is a little disconcerting. Especially considering the fucking timing of it all.

Goddammit.

Not to make you paranoid at this time, but it sounds too close to be coincidental. Hopefully they are not going to setup another shop on you. I don't know your business, but I would keep an eye on your clients as well. The timing sucks too frown
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« Reply #31 on: November 03, 2008, 07:03:44 PM »

I would like to suggest lashing the other employees to their stations by piano wire around their manbeans....but that's just me. slywink
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« Reply #32 on: November 03, 2008, 07:21:58 PM »

I will keep your son and family in my prayers.

bob
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« Reply #33 on: November 03, 2008, 10:49:06 PM »

Best wishes, and a speedy recovery to the little fella.  smile
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« Reply #34 on: November 04, 2008, 12:45:49 AM »

Wow, that's a rough hand for your little guy to be dealt.  I hope tomorrow goes perfect for you guys and that you can get the business back up and running smooth with as little stress as possible.
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« Reply #35 on: November 04, 2008, 12:49:25 AM »

BTW are is soes on backwards in that pic? smile  Again GL all.
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lildrgn
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« Reply #36 on: November 04, 2008, 01:36:13 AM »

Quote from: Daehawk on November 04, 2008, 12:49:25 AM

BTW are is soes on backwards in that pic? smile  Again GL all.

smile

Yes. He's wearing my hat, backpack, watch and shoes.

Thanks, D.
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« Reply #37 on: November 04, 2008, 02:37:53 AM »

I don't know what you're going through, but with two boys about the same age, I can sure imagine.  That's gotta be rough.  Hope everything goes well, it sounds like you are doing everything right for him so far.  We're all pulling for you guys.
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lildrgn
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« Reply #38 on: November 04, 2008, 04:51:24 AM »

Hey guys,

Thanks again for the thoughts. I've had a really shitty day, but at the end of the day, I got to come home to kids and family. We are scheduled for a 6:15 check in with surgery starting about 7:30am. It's a 5 hour or so surgery, though the doc says he's had it done in 3 hours before.

I usually don't stress or freak out about these kind of things, but this is much different than Riley getting his tonsils out. Add in the junk at work and stuff and, well, I'm a bit out of it. I had a tiny little cry tonight when I got home. My mom was here and I guess she had a sad day too, so she was crying with Haley. Then Haley started going on about how she missed my dad and we were all Weepy Weepersons for a few seconds.

I'll be updating blogs/GT/etc as the days progress. Thanks to everyone for making a difference.

GT FOR PREZ!
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« Reply #39 on: November 04, 2008, 05:11:39 AM »

I've read this post about 15 times now....ever since Lildrgn posted it.  Its hard for me to read and get through this type of post with kids involved.  I wish you the very best and hope/pray that everything will go well.  Riley and your family are in our thoughts.
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