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Author Topic: Riley's brain surgery update, 2 years later  (Read 8099 times)
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Huw the Poo
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« Reply #40 on: November 04, 2008, 07:46:59 AM »

It's hard to keep in mind, but the surgery is of course a good thing, not a bad thing.  Not much longer before you can get your lives back on track now, lildrgn.  I'll be thinking of you all while I'm in work. smile
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« Reply #41 on: November 04, 2008, 12:08:04 PM »

Quote from: lildrgn on November 04, 2008, 04:51:24 AM

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.

In the off chance that you get to read this before leaving or soon enough for it to matter...

It's gonna be a LONG 3-5 hours. I suggest, right after they wheel him back, you and your wife go grab a bite to eat. Leave your cell number(s) with the staff, but go to whatever's within 5-10 minutes of the hospital and grab some breakfast. 1) He's in capable hands and you and your spouse's proximity to events won't change a thing. 2) It'll pass some time. 3) It's easy to forget to take care of YOU while you're waiting on a loved one in surgery. Trust me, I've done it more than my fair share.

If you've got a book, DS, laptop with wi-fi access, bring 'em. Bring 'em all. I've found my mood can be fickle while waiting on surgery and what I can concentrate on changes with each one. Having options helps.

Good luck with Rye, Haley and the gang. It's gonna be a nerve-wracking and exhausting experience, but you'll get through this.
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« Reply #42 on: November 04, 2008, 01:34:14 PM »

good luck. 

Kids are resilient he will bounce back quickly.
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« Reply #43 on: November 04, 2008, 02:12:38 PM »

What does the surgery entail?
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lildrgn
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« Reply #44 on: November 04, 2008, 04:14:07 PM »

We just sent Rye off to surgery. Note to self: get Riley a Nintendo DS soon. That thin worked better than any anesthetic could. More later. No reception in hospit and it's freakin cold out here!

And thanks for the wellwishes!
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« Reply #45 on: November 04, 2008, 04:15:28 PM »

Good luck to your son and to the rest of your family!
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« Reply #46 on: November 04, 2008, 05:13:54 PM »

Good luck! We are thinking about you today!! Please let us know how the little guy is.
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« Reply #47 on: November 04, 2008, 05:47:52 PM »

Hope all goes well man!
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« Reply #48 on: November 04, 2008, 06:21:01 PM »

So far so good. No news is good news. Surgery started at 840 this morning. 1020 now so there's a few hours yet to go. More as it happens.
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« Reply #49 on: November 04, 2008, 06:40:19 PM »

i don't know about anyone else, but at this point the presidential election is secondary.  keep us updated!
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« Reply #50 on: November 04, 2008, 07:29:00 PM »

Well, apparently Riley is all secured and pinned down. They started the microsurgery at 1035 and we're just hanging around killing with some friends.

All good for now.
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« Reply #51 on: November 04, 2008, 07:32:16 PM »

thank goodness for that!
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« Reply #52 on: November 04, 2008, 07:32:47 PM »

killing with some friends? Please let that be chillin'...

What does the surgery entail? What can they do to correct his development?
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« Reply #53 on: November 04, 2008, 09:26:20 PM »

Oops. Chillin or killin time is what I meant. Wrt the surgery, I'll have to fill you in when I have a real keyboard. You can check rye's blog for info too.
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« Reply #54 on: November 04, 2008, 09:46:53 PM »

Quote from: lildrgn on November 04, 2008, 09:26:20 PM

Oops. Chillin or killin time is what I meant. Wrt the surgery, I'll have to fill you in when I have a real keyboard. You can check rye's blog for info too.

Just read up on his blog, and as heartbreaking as it must be to see him hurting....at least the good news is really good news so far. nod
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« Reply #55 on: November 04, 2008, 10:52:44 PM »

wishing all of you the best lildrgn.  you have a strong little boy there. 
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« Reply #56 on: November 05, 2008, 06:04:12 AM »

Also posted at Riley's blog. Thanks to ALL YOU CATS for the kind words. You have no idea how much they mean to me. I told Riley about all the people, friends and strangers, who are thinking about him and just about broke down doing so.

You guys are the best. Here's the post:

Quote
Marci and Rye are still at the hospital, hopefully resting well. I just got home with Haley and she is hopefully asleep too.

Man. What a day! Whew!

Marci, Rye and I started the day at 5. Well, Marci and I did. Rye woke himself up around 5:30 and we were out the door by 5:50 or so. It was miserable out. Rainy, windy and darn cold. We made the drive to Children's and got down to business.

After checking in, we waited in the surgery waiting area for a few minutes. Talk about depressing. The room is fairly large and there were, at 6:30 in the morning, no less than 10 families waiting there. Waiting for what? Surgery. For their kids. How lousy is that?

We got called back and taken into a pre-surgery room. Riley was his hyper and goofy self. I asked if he was scared at all and he said no. All this time, I've avoided using the word "scared", not wanting to color his perception of the surgery. I asked him why he wasn't scared. He said because he already knew everything. I guess if you know it all, there's nothing to be afraid of!

A bunch of nurses, anesthesiologists, doctors and surgeons came by to visit. They asked us questions (does he wear contact lenses or glasses? !!), they asked if we had any questions. They gave Rye a drug (Versed?) which was supposed to calm him down. Someone brought in a pink Nintendo DS labeled ROCKET SLIME and let Rye play with it. The combination of the two had him on one mellow cloud. He became a floppy little dude and when it was time for him to go, Dr. Jim the anesthesiologist took him without a fight. And that was it. He was gone. Marci and I held each other for a few moments and shared a few tears. After 2 years of searching, our little boy was finally off to get some answers.

Marci and I went to get a bite to eat. A couple of our friends, Felicia and Rich, were planning to join us at the hospital for moral support. I tell you, I could've used them at breakfast time. They could've brought some edible food! But I digress.

After a lousy meal, Felicia showed up. Her and Marci and I chatted a bit and hung out. Rich was nowhere to be found. Finally, an hour later, he showed up. Thanks to the power of his iPhone maps, he ended up at Children's Hospital's admin offices in downtown Seattle. Oops. Once we were all rounded up, we headed to the family hang-out area to relax, talk and update.

We did receive pages throughout the morning with updates to Riley's condition. Basically this old school black clip on pager would wail loudly, indicating that we needed to call the ICU desk, which would then patch us through to the OR. They told us that they had Riley pinned down, that they started the micro surgery, things like that. We got a call later saying that some woman wanted to talk to us about the video we'd shot yesterday and the video being shot currently of the surgery.

We met her downstairs and she just kept talking and talking. She was the head or some VIP of the Chiari Syringomyelia Foundation (CSF), the group that was going to use Rye's video for education and information for people researching Chiari. I thought she was going to talk about consent, etc, but she was there kind of pushing her cause. She gave us good info, but it was a little too sales-pitchy for me, so I tuned her out. Finally, Rich and I headed out and went to chat.

I was also updating Facebook, this blog, as well as my thread at Gaming Trend all this time. I had my trusty little Blackberry with me and was plugging away with updates. I kind of know how a smoker feels now. The hospital is a cell dead zone and in order to post or email, I had to go outside. So every 45 minutes or so, I hoofed it outside to do just that. If I did smoke, I guess I'd be multitasking out there.

We got a page around 11 or so saying that Riley's microsurgery (the actual work on the brain) had begun. About an hour later, we got a page indicating that Dr. E wanted to speak to us. We hoofed it over to the ICU area and waited. My imagination started goofing off again and I started to expect Dr. E to come around the corner with a defeated look on his face and bad news for us. Before I completely freaked out, he came and told us surgery was done and it went as perfect as it could have.

Sweet relief!

He said Rye hardly lost any blood (a thimble-full), that the extent of his Chiari was "impressive" and that he was able to do exactly what he needed to do. He showed us a few snips of video that was shot from the microscope's vantage point. It was pretty fascinating. The hole in Rye's head looked to be about as big around as a Yoplait yogurt cup. We got to see his brain (looked like crabmeat), as well as his cerebral tonsils "shrink" as Dr. E moved them back away from the spinal cord. Incredible stuff.

After talking with Dr. E privately, we did it again for the cameras. It'll be interesting to see just how photogenic we are after stressing for 5 hours and having gotten up at 5 in the morning. I hope to have a DVD soon so we can put some up for everyone to see.

From there ,we had some lunch. Riley was still out and had to have a follow-up CT scan to check for any blood clots. After that, he'd be put in the ICU where he'd come up from the anesthesia. So it was back to the cafeteria for more fun and games.

About a half hour into eating, we got a page saying Rye was up. Marci hoofed it to his room, a little nervous because she'd promised him that she'd be there when he woke. When we got there (pretty much the exact farthest point in the hospital from the cafeteria), he was moaning and sobbing for Marci. It was pretty sad and emotional. I saw him in his bed, shirtless, then I saw his scars on the back of his head. He had a half-reverse mohawk from the base of his neck, up the back of his head. He had two 2" long vertical scars and, in all, looked pretty gnarly.

I held it together pretty well until I started telling him how proud I was of him and that there were so many people offering their thoughts, prayers and well-wishes. It's amazing how one little dude can have so many people (strangers, even!) pulling for him.

Marci held Rye for a while. He was tied up with cords and tubes and a catheter (!) and it was a chore, but she did it. He eventually calmed down and faded in and out. I was so excited to see him and really marveling in the fact that over the past 6 hours or so, someone performed brain surgery on him, yet here he was, even better than he was then. Incredible!

Over the rest of the day and night, we had Rich and Felicia there, then Haley, Ted and Judy showed up later. Haley got a little weird when she saw Rye's scars, but she was cool with him later, as long as his scars were hidden. She gave him a card she wrote at school and I just about lost it when I read that Haley wrote "Riley, I miss you" to him. Rye got to talk a little and I'm happy to report that the same little dude is there under all the wires and hoarse voice. Poor guy didn't eat anything all day, and only had a little apple juice in the early evening.

So for the next few nights and days, Riley and Marci will be staying at the hospital. He should be getting out of the ICU and into standard recovery by tomorrow (pending tonight's stay), and, with any luck, will be home by Saturday (my estimation, crossing fingers!).

Later tonight, Knight and Shannon stopped by. We were able to take Shannon in, but poor Knight not only couldn't come in, but had to wear a germ mask as he's been getting over a case of the flu. Shannon came bearing gifts. She brought a DS! Not sure if she knew or if it was coincidental, but we asked if Riley wanted a gift and he lit up as much as he could. She gave it to him, unwrapped, and he gave a nice little smile. You could tell he was super happy about it even though he couldn't really show it.

Overall, it was a scary, exhausting, funny, relieving day. I am beyond relieved that my little dude made it through surgery with flying colors. I'm so happy about the potential he has to improve. And I cannot wait to have a root beer with him. That's the promise I made him way back when, that when he got all better, he and I were gonna have root beers to celebrate. That'll be a good day.

PS: Pictures at the blog.
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lildrgn
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« Reply #57 on: November 05, 2008, 06:09:32 AM »

Quote from: Purge on November 04, 2008, 07:32:47 PM

What does the surgery entail? What can they do to correct his development?

Purge, here's a link written for the Dr. who performed Riley's surgery.

LINK

Wait til you see the video! eek

We will work with speech, physical and occupational therapists to help with Rye's development. His swallowing is something that will have to come back on its own. More importantly, he will not get worse. Even if nothing improves from here on out, he will not get worse and that is good.

Of course, we want him to improve, so we'll do our best to get that rolling too.

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« Reply #58 on: November 05, 2008, 06:17:09 AM »

That's just awesome news man.  Here's hopes for a speedy recovery!
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« Reply #59 on: November 05, 2008, 07:34:42 AM »



WOOOOOO!  Dude, reading that almost brought me to tears!  I'm so pleased for you all.  Give Rye a hug from uncle Huw the Poo! biggrin
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« Reply #60 on: November 05, 2008, 07:56:41 AM »

I'm horrible at this stuff, so I'll just goive you and yours a hearty w00t!  thumbsup
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« Reply #61 on: November 05, 2008, 08:18:42 AM »

Quote from: Huw the Poo on November 05, 2008, 07:34:42 AM



WOOOOOO!  Dude, reading that almost brought me to tears!  I'm so pleased for you all.  Give Rye a hug from uncle Huw the Poo! biggrin

That smiley used sums it up.  As Ceekay said:  w00t!
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« Reply #62 on: November 05, 2008, 08:41:35 AM »

That is the most awesome thing I've read all night (and I voted for Obama)! I hope everything goes as smootly for all of you as it seems to have gone so far!
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« Reply #63 on: November 05, 2008, 09:05:02 AM »

Glad to hear the good news!  You have a brave little dude, as well as yourself and your family.   thumbsup
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« Reply #64 on: November 05, 2008, 12:35:26 PM »

Congrats all! I had to go for a wisdom tooth extraction yesterday. I was nervous until I tought about your little guy having brain surgery then I felt silly smile Glad everything is ok with im....my tongue tip is still numb frown heh.

Oh and wen I read he went back at 10:30am I smiled cause thats right when my tooth pulling started smile
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« Reply #65 on: November 05, 2008, 12:56:44 PM »

Great news!!

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« Reply #66 on: November 05, 2008, 01:55:44 PM »

I am so glad everything went well. I will keep your son and family in my prayers.

bob
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« Reply #67 on: November 05, 2008, 02:14:40 PM »

Thank God!  I read this and, combined with everything else going on, now feel that I've woken up in a sane world for the first time in years.

...although the good news from you trumps everything else.   icon_wink
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« Reply #68 on: November 05, 2008, 02:20:43 PM »

Quote from: Huw the Poo on November 05, 2008, 07:34:42 AM



WOOOOOO!  Dude, reading that almost brought me to tears!  I'm so pleased for you all.  Give Rye a hug from uncle Huw the Poo! biggrin

I'll second the above with the addendum that it did bring me to tears. Awesome news, lildrgn. Give Rye an extra root beer for me.  slywink
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« Reply #69 on: November 05, 2008, 02:46:14 PM »

Wow, I got teary reading that post. I'm sooooooooooooo happy for you guys and the little guy. Let the road to recovery begin, you got through the hardest part.
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« Reply #70 on: November 05, 2008, 03:18:37 PM »

Great news.  I am so happy. 

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« Reply #71 on: November 05, 2008, 03:28:25 PM »

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

Quote
About an hour later, we got a page indicating that Dr. E wanted to speak to us. We hoofed it over to the ICU area and waited. My imagination started goofing off again and I started to expect Dr. E to come around the corner with a defeated look on his face and bad news for us. Before I completely freaked out, he came and told us surgery was done and it went as perfect as it could have.

Told ya slywink

Congrats to you & yours, lildrgn. Great day all around!
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« Reply #72 on: November 05, 2008, 04:13:29 PM »


Right on!
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« Reply #73 on: November 05, 2008, 06:30:11 PM »

Glad to hear it all came off so well.  Thanks for keeping us updated.
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« Reply #74 on: November 05, 2008, 06:37:01 PM »

I am happy to hear of the positive results.  I wanted to make sure I had time to read through the original post before commenting and only recently had a moment to read through the entire thread.  Regardless of my reputation on the forums regarding children, I am very pleased to know that your son handled the surgery well and that the recovery process has begun.  I cannot even begin to know what it must be like to be a parent (yes, we have dogs, but experience with pets will never come close to what true parenthood must be like), and I can only imagine the emotional strain your son's condition and subsequent surgery has placed not only on you but your entire family.  I am very happy to know that your son is safe and I am sure, simply based on your posts, that the level of effort and love you and your family will put into aiding in your son's recovery will lead to amazing results.  Best of luck throughout your son's development. 
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« Reply #75 on: November 05, 2008, 06:45:21 PM »

So relieved to come in here and read this!  My wife and I were talking about you guys at breakfast today, wondering how things had gone, and imagining how difficult the whole ordeal must be for you and your wife.

Betcha he's up and at 'em again in no time!
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« Reply #76 on: November 05, 2008, 06:51:27 PM »



Nice, huh?



That's my boy!

Taked to Marci this morning. I guess Riley puked a few times last night and today he's really dragging. frown

He was all perky when I left him last night. Marci says he's in a lot of pain today.

They should be moved from the icu today. More later.

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« Reply #77 on: November 05, 2008, 06:56:53 PM »

That's fuckin' punk, man.

Sorry he's hurting. frown

I imagine a hole in your skull WOULD be painful.

I guess they probably have to be pretty careful w/ pain meds for such a little guy, huh?
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« Reply #78 on: November 05, 2008, 07:01:55 PM »

Quote from: kratz on November 05, 2008, 06:56:53 PM

That's fuckin' punk, man.

Sorry he's hurting. frown

I imagine a hole in your skull WOULD be painful.

I guess they probably have to be pretty careful w/ pain meds for such a little guy, huh?

Yeah. It's pretty insane. They took him off the morphine last night but he was in a lot of pain earlier so I think they put it back on. I'll be heading out to check on them soon.
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« Reply #79 on: November 05, 2008, 07:03:17 PM »

Glad he made it through ok.  I hope the pain subsides shortly!
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