We got two bits of good news today. First off, Riley got his NG tube removed! See the picture in the previous post!
Good ol' Rye is pretty much back to normal, appearance-wise, at least. His hair is growing back and you can almost not see his scar anymore. It's pretty incredible; I was just realizing that it's only been 3 weeks since his surgery.
Anyway, Marci got to do the honors. She pulled the tube and...... out it came. All 4 feet of it. Or something like that. Kind of gross, if you ask me.
The other bit of news is that Riley got granted a wish from the Make a Wish foundation! What he's going to wish for is unknown at this point, but how cool is that? You can check out their website at www.wish.org. I just took a look and got all choked up for some reason. Weird.
Yay Riley!!!
Wednesday, November 26, 2008
Saturday, November 22, 2008
Tuesday, November 18, 2008
All clear for take off!
Marci took Rye to Children's for a follow up today. Tube is still staying in, though we expected that. They probably won't take it out until next Wednesday. The good news is that he got cleared to go back to school on Thursday!
Marci will have to train the school staff on what Rye can and can't do. Basically, we've been told to keep him completely mellow. Stuff like running and jumping are no-no's for now.
It's kind of hard to keep that in mind; Riley has been in such great shape since he's been home. We're kind of bopping along, doing our own thing. A few days ago, Marci remembered a story Dr. E told us.
He said he had a teenaged patient who had decompression surgery done. After about 2 weeks of recovery, her dad thought she was doing fine (just like we think Rye is), so they went snowboarding. The good news was she could do it. The bad news was that she ended up popping her dura (under her skin) and had to go back in for surgery.
We don't want that, obviously, so we're going to err on the side of caution and try to keep Riley as low-key as possible.
So going to school should be interesting for us. Riley's been with family for pretty much the past 2 weeks non-stop. I think it'll be great for Rye. As much as he loves that DS, to get some socializing and learning and routine in will be good.
It'll be nice for Marci, too. She'll hopefully be able to get a breather; her body and back have been misbehaving for her. Any reduction in stress will be welcomed. We need a break before the holidays ramp up. Yikes.
Marci will have to train the school staff on what Rye can and can't do. Basically, we've been told to keep him completely mellow. Stuff like running and jumping are no-no's for now.
It's kind of hard to keep that in mind; Riley has been in such great shape since he's been home. We're kind of bopping along, doing our own thing. A few days ago, Marci remembered a story Dr. E told us.
He said he had a teenaged patient who had decompression surgery done. After about 2 weeks of recovery, her dad thought she was doing fine (just like we think Rye is), so they went snowboarding. The good news was she could do it. The bad news was that she ended up popping her dura (under her skin) and had to go back in for surgery.
We don't want that, obviously, so we're going to err on the side of caution and try to keep Riley as low-key as possible.
So going to school should be interesting for us. Riley's been with family for pretty much the past 2 weeks non-stop. I think it'll be great for Rye. As much as he loves that DS, to get some socializing and learning and routine in will be good.
It'll be nice for Marci, too. She'll hopefully be able to get a breather; her body and back have been misbehaving for her. Any reduction in stress will be welcomed. We need a break before the holidays ramp up. Yikes.
Saturday, November 15, 2008
Back to normal?
Well, today Ted and Judy left. It's just the 4 of us at home now. Having the company was great; not only were they helpful around the house, they were also another way to keep the kids busy. The trouble was, their health isn't what it used to be and just getting around the house, moving from floor to floor, would get the best of them.
Considering the events of the past few months, health is pretty important to us these days. The fact that both Ted and Judy are having major issues with their health is pretty unsettling. I don't think anyone's necessarily in dire straights, but things are definitely not like they used to be.
For now, we're just going to continue on. We're giving Riley his "nose drinks" every couple hours (water into his NG tube). Sometime this week he realized he could multitask while he was being pumped with water. He showed me that he could drink from his cup while I was giving him water. I told him to stand on one leg and rub his tummy, so he did. He was quite proud of this accomplishment.
He's been getting a ton of presents. I feel kind of guilty about it. People come by, they bring gifts. I guess if I was on the outside looking in, hearing that a friend's kid had brain surgery, I'd think, "well, they're probably cooped up, the kid is laying in bed with not a lot to do. Let's give him some gifts!"
It's a grand gesture, but to me (and maybe it's because I'm living it with him), Riley seems pretty darn normal. Now, we absolutely have to be aware of his incision and keep him fairly mellow, but by and large, we've been business as usual at home. He's goofing around, we're playing, he just has a little reverse-mohawk on the back of his head.
He gets to go back to school next week, so that should be good for him. Though since he's been with Marci pretty much 24/7 for the past two weeks, we'll see how that goes.
Considering the events of the past few months, health is pretty important to us these days. The fact that both Ted and Judy are having major issues with their health is pretty unsettling. I don't think anyone's necessarily in dire straights, but things are definitely not like they used to be.
For now, we're just going to continue on. We're giving Riley his "nose drinks" every couple hours (water into his NG tube). Sometime this week he realized he could multitask while he was being pumped with water. He showed me that he could drink from his cup while I was giving him water. I told him to stand on one leg and rub his tummy, so he did. He was quite proud of this accomplishment.
He's been getting a ton of presents. I feel kind of guilty about it. People come by, they bring gifts. I guess if I was on the outside looking in, hearing that a friend's kid had brain surgery, I'd think, "well, they're probably cooped up, the kid is laying in bed with not a lot to do. Let's give him some gifts!"
It's a grand gesture, but to me (and maybe it's because I'm living it with him), Riley seems pretty darn normal. Now, we absolutely have to be aware of his incision and keep him fairly mellow, but by and large, we've been business as usual at home. He's goofing around, we're playing, he just has a little reverse-mohawk on the back of his head.
He gets to go back to school next week, so that should be good for him. Though since he's been with Marci pretty much 24/7 for the past two weeks, we'll see how that goes.
Tuesday, November 11, 2008
Road to recovery
The past few days have been pretty good. No major issues with Rye so far. All he wants to do is play Nintendo DS.
He wore something other than sweats yesterday, so it was nice to see him looking normal for a change.
For 99% of the day, he's in awesome spirits. He gets to hang out at home, watch TV and play games all day long. His grandparents are there, as well as Marci, so he's got all his favorite things available to him.
1% of the day, he's a little uncomfortable and tired. He might be a little down, too, with the NG tube and all. But, all in all, things are going great and Marci and I couldn't be happier about it.
He wore something other than sweats yesterday, so it was nice to see him looking normal for a change.
For 99% of the day, he's in awesome spirits. He gets to hang out at home, watch TV and play games all day long. His grandparents are there, as well as Marci, so he's got all his favorite things available to him.
1% of the day, he's a little uncomfortable and tired. He might be a little down, too, with the NG tube and all. But, all in all, things are going great and Marci and I couldn't be happier about it.
Monday, November 10, 2008
Sunday, November 9, 2008
Relaxing with Papa
Go Seahawks. Ugh.
Saturday, November 8, 2008
Home sweet home
I predicted today and today was the day. We got home at 2 and it's all good.
This morning we got a call from some old friends who just found out about Riley's surgery via Facebook. Nuria contacted us and offered to watch Haley for a few hours today. Coincidentally, Haley had just been begging me this morning to have a playdate with someone; she was getting bored with spending so much time at the hospital. So, after some finagling, Ted, Judy and I got Haley over to the Coes' house and we dropped her off.
As I arrived at the hospital, I saw Marci's friend Felicia getting on the elevator. As I got around the corner and saw the elevator, I saw Marci's friend KC, her daughter Katri (Haley's friend), Felicia's daughter Sophie (Haley's friend), and another girl, Erin (Haley's friend).
I felt a little bad about this. Here Haley was saying how she wanted to see her friends and three of her classmates were at the hospital to see us. Luckily, she didn't know and, as it turned out, she had a fabulous time at the Coes. It was probably good she wasn't there anyway, we barely all fit into Riley's room as it was.
Today was a beautiful day. Sunny and warm, for the most part. We were able to take Riley outside to play for the first time in a week. Not only that, he was wire and cable free! It was so cool to see him out and about in the sun and playing with all of Haley's friends.
As an aside, Rye has it made. In about 10 years or so, when Haley's over with her friends, he'll be like a kid in a candy store.
Anyway, we finally got our discharge papers, and it was time to go. Riley was in a great mood. He ate fries and chicken strips for lunch and was just a kick in the pants. We piled into Ted's car and he watched me play DS all the way home.
At home, he was a little tired. Pretty soon, the Coes came over with Haley. Knight, Shannon and Mom came over as well (Mom seems to be fine now!). Uncle Bob and Yumei also made it over and we all just hung out for a bit. A short time later, Rye and Marci went to catch a nap so everyone headed home.
So, that's pretty much what happened today. Haley and I made a nice little banner welcoming Marci and Riley home. We were provided dinner by Nuria (yummy!). Riley practically overdosed on DS. Haley cried herself to sleep (so tired!). And I'm about to have a bowl of cereal.
In other words, the more things change, the more they stay the same.
I want to thank Children's Hospital for their, well, hospitality; Dr. E for his expertise and patience; all the nurses for their care and understanding; Dr. Spanier at Pediatric Associates for not accepting, "He'll grow out of it" as an answer; Rich and Felicia for being there with Marci and Rye almost as much as I was; Ted and Judy for driving 900+ miles to help us keep an eye on Haley; Debbie, Andrew and Helen for creating beautiful decorations to hang in Riley's room; Knight and Shannon for their support and, of course, the DS; anyone who has offered us support in person, online, on Facebook, in prayer, on this blog, at my thread at Gaming Trend, or anywhere else.
And, I want to thank most of all, Marci. She has been tireless through this entire ordeal. Not only that, but while she's been campaigning for Riley, she's also been taking care of our household. She is the glue that holds this family together. As a family we are a team, but without our heart, we are nothing. I am so lucky have Marci as the heart of our family. Her perseverance has given Riley a chance to lead a normal life. Her pursuit of this outcome has been incredible and all the credit goes to her.
Baby, I love you. Thank you for what you've done. XOXO.
This morning we got a call from some old friends who just found out about Riley's surgery via Facebook. Nuria contacted us and offered to watch Haley for a few hours today. Coincidentally, Haley had just been begging me this morning to have a playdate with someone; she was getting bored with spending so much time at the hospital. So, after some finagling, Ted, Judy and I got Haley over to the Coes' house and we dropped her off.
As I arrived at the hospital, I saw Marci's friend Felicia getting on the elevator. As I got around the corner and saw the elevator, I saw Marci's friend KC, her daughter Katri (Haley's friend), Felicia's daughter Sophie (Haley's friend), and another girl, Erin (Haley's friend).
I felt a little bad about this. Here Haley was saying how she wanted to see her friends and three of her classmates were at the hospital to see us. Luckily, she didn't know and, as it turned out, she had a fabulous time at the Coes. It was probably good she wasn't there anyway, we barely all fit into Riley's room as it was.
Today was a beautiful day. Sunny and warm, for the most part. We were able to take Riley outside to play for the first time in a week. Not only that, he was wire and cable free! It was so cool to see him out and about in the sun and playing with all of Haley's friends.
As an aside, Rye has it made. In about 10 years or so, when Haley's over with her friends, he'll be like a kid in a candy store.
Anyway, we finally got our discharge papers, and it was time to go. Riley was in a great mood. He ate fries and chicken strips for lunch and was just a kick in the pants. We piled into Ted's car and he watched me play DS all the way home.
At home, he was a little tired. Pretty soon, the Coes came over with Haley. Knight, Shannon and Mom came over as well (Mom seems to be fine now!). Uncle Bob and Yumei also made it over and we all just hung out for a bit. A short time later, Rye and Marci went to catch a nap so everyone headed home.
So, that's pretty much what happened today. Haley and I made a nice little banner welcoming Marci and Riley home. We were provided dinner by Nuria (yummy!). Riley practically overdosed on DS. Haley cried herself to sleep (so tired!). And I'm about to have a bowl of cereal.
In other words, the more things change, the more they stay the same.
I want to thank Children's Hospital for their, well, hospitality; Dr. E for his expertise and patience; all the nurses for their care and understanding; Dr. Spanier at Pediatric Associates for not accepting, "He'll grow out of it" as an answer; Rich and Felicia for being there with Marci and Rye almost as much as I was; Ted and Judy for driving 900+ miles to help us keep an eye on Haley; Debbie, Andrew and Helen for creating beautiful decorations to hang in Riley's room; Knight and Shannon for their support and, of course, the DS; anyone who has offered us support in person, online, on Facebook, in prayer, on this blog, at my thread at Gaming Trend, or anywhere else.
And, I want to thank most of all, Marci. She has been tireless through this entire ordeal. Not only that, but while she's been campaigning for Riley, she's also been taking care of our household. She is the glue that holds this family together. As a family we are a team, but without our heart, we are nothing. I am so lucky have Marci as the heart of our family. Her perseverance has given Riley a chance to lead a normal life. Her pursuit of this outcome has been incredible and all the credit goes to her.
Baby, I love you. Thank you for what you've done. XOXO.
Friday, November 7, 2008
Leave Riley a comment!
If you're interested, I'd love to see some comments that we could read to Riley after he's out of the hospital. Simply click on the "Post a Comment" link below and send him a note!
Thanks!
Thanks!
An interesting developement
In the picture preceding this, do you see something funny? Poor Riley now has a tube in his right nostril. After the events of the day (see here), I walked into Rye's room at 5:00 and saw him standing there with a little yellow tube snaking out of his nose. I just about broke down when I saw how broke down he appeared. All the spirit he had yesterday seemed to be gone.
I was bummed to see that as I hadn't seen him all day. Marci said he was a champ all day, until 3 doctors decided he needed to have the tube (officially called an NG [nasogastric] tube) inserted. Apparently it took 3 people to hold him down in order to put the tube in.
What the NG tube does is allow fluid to be poured directly into his stomach. The liquid bypasses his trachea and, in doing so, allows Rye to stay hydrated. This lack of hydration is why we wouldn't be able to leave.
So what's happening is that when Rye eats or drinks certain things, a small amount is going into his airway, instead of all into his stomach. When that happens, he aspirates and has to cough to clear his throat. If he doesn't clear, then it can pool in there and bad things can happen (pneumonia, infection, etc). This tube is supposed to bypass all that and, within the next few weeks, we'll have him checked out again to make sure he's able do drink properly.
We have a nurse in the room now showing Marci how to use a 2oz syringe to give Rye a drink of water. She has to hook it up to the NG tube and slowly depress the plunger to get the water in his tummy. So far, Riley doesn't like it. It's a weird sensation, with the coolness of the water in the tube going against the skin in his nose. When it's not happening, he's fine. When the water is flowing, he protests, but we're told he'll get used to it. If there's one thing we know, is that Riley will adapt.
It's really hard to see Rye like this, especially after how happy and peppy he was the past few days. He's kind of back to how he was on the first day, attitude-wise. I don't know how Marci's been able to hold it together the past few days. It's been a wild few days and I cannot wait to be out of here. As great as Children's has been, it's time for us to go.
In the meantime, there are two delicious smelling pizzas waiting for us from Pagliacci's (oh yeah. I forgot to eat lunch today!), and as soon as Marci's done, it's dinner time.
Feel free to come visit tomorrow, I'm sure we could use the company. Call me or Marci for details.
I was bummed to see that as I hadn't seen him all day. Marci said he was a champ all day, until 3 doctors decided he needed to have the tube (officially called an NG [nasogastric] tube) inserted. Apparently it took 3 people to hold him down in order to put the tube in.
What the NG tube does is allow fluid to be poured directly into his stomach. The liquid bypasses his trachea and, in doing so, allows Rye to stay hydrated. This lack of hydration is why we wouldn't be able to leave.
So what's happening is that when Rye eats or drinks certain things, a small amount is going into his airway, instead of all into his stomach. When that happens, he aspirates and has to cough to clear his throat. If he doesn't clear, then it can pool in there and bad things can happen (pneumonia, infection, etc). This tube is supposed to bypass all that and, within the next few weeks, we'll have him checked out again to make sure he's able do drink properly.
We have a nurse in the room now showing Marci how to use a 2oz syringe to give Rye a drink of water. She has to hook it up to the NG tube and slowly depress the plunger to get the water in his tummy. So far, Riley doesn't like it. It's a weird sensation, with the coolness of the water in the tube going against the skin in his nose. When it's not happening, he's fine. When the water is flowing, he protests, but we're told he'll get used to it. If there's one thing we know, is that Riley will adapt.
It's really hard to see Rye like this, especially after how happy and peppy he was the past few days. He's kind of back to how he was on the first day, attitude-wise. I don't know how Marci's been able to hold it together the past few days. It's been a wild few days and I cannot wait to be out of here. As great as Children's has been, it's time for us to go.
In the meantime, there are two delicious smelling pizzas waiting for us from Pagliacci's (oh yeah. I forgot to eat lunch today!), and as soon as Marci's done, it's dinner time.
Feel free to come visit tomorrow, I'm sure we could use the company. Call me or Marci for details.
Thursday, November 6, 2008
Latest on Riley
Since getting out of surgery, Riley has spent 99.99999% of his recovery time in his bed. He's been playing DS (Thanks Shannon) and watching tv most of the time. He hasn't slept much, but I did get to see him eat a bit and that was fun to see. It pepped him up and put some food in his belly.
Today Marci's going to try to get him out of bed. He needs a shower and a tooth brushing, though not necessarily in that order. He threw up a few times on Tuesday and hasn't brushed yet. It's so bad that even he wants to brush his teeth.
Rye seems to be a little afraid to get up and go. He says his head doesn't hurt that bad, but I think he's a little reluctant to test it.
I can't wait for this little dude to get home. I see him every day at the hospital, but I miss him terribly. Marci too, for that matter. Friday/Saturday can't come soon enough.
Today Marci's going to try to get him out of bed. He needs a shower and a tooth brushing, though not necessarily in that order. He threw up a few times on Tuesday and hasn't brushed yet. It's so bad that even he wants to brush his teeth.
Rye seems to be a little afraid to get up and go. He says his head doesn't hurt that bad, but I think he's a little reluctant to test it.
I can't wait for this little dude to get home. I see him every day at the hospital, but I miss him terribly. Marci too, for that matter. Friday/Saturday can't come soon enough.
Wednesday, November 5, 2008
Out of the ICU
And into regular care!
One good thing about doing the video thing is that it got us priority treatment to this new room. Big, quiet and a view of the U District.
Riley got out of his room for the first time and now he's relaving in his new room. His catheter is out and he's almost wire free!
Eating food
The OT is here now and doing some food testing. He had some Mac and cheese, Doritos and Cheetos. She's trying to see if he's still silently aspirating. He's almost good ol' Riley and it's fantastic. We played some DS and spirits are very high. He's winking at people and his sense of humor is coming around.
Laying in bed with Rye
Bummer
Taked to Marci this morning. I guess Riley puked a few times last night and today he's really dragging. :(
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.
Tuesday, November 4, 2008
Riley's Surgery
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.
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.
Update
Marci's parents are here with Haley. I took Hay back first. She was a little freaked out when she saw Rye's scars. But was ok about it a few minutes later. The in-laws are with him now and I'm gonna head back with Hay to get Rye a drink.
In his room now
Riley is crying and in a lot of discomfort now. It's pretty heartbreaking togear him sob, even though it's to be expected. I just want him to be ok and happy now.
Maybe I should get the DS...
He's out and he's good
Surgery was done at noon or so. Dr. E came out and told us that it couldn't have gone better. We're going to go see Riley now. Thanks to everyone's well-wishes and prayers!
Update
1035: I guess the prepwork is done. They have Riley screwed in and stabilized. They have removed C1(vertebra) and have started the microsurgery.
I just imagine him face down on the table with a hole cut on his head. Scary.
I just noticed
My socks don't match. And I didn't bring a book. Or a battery charger for the BlackBerry. I am woefully prepared.
Cafeteria food
Children's is a great hospital and all, but, man! Can they do something about the food in the cafeteria?
I just ate scrambled eggs, hash browns, sausage and bacon. I can tell you that only the bacon was good. The maple bar was tasty as well.
I suppose I shouldn't complain. After all, I don't go to Taco Bell for a physical.
And, he's off!
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!
Monday, November 3, 2008
There's no turning back now
Well, tonight's the night and tomorrow's the day. Marci's running around the house packing for a week; she'll be staying with Riley at the hospital as he recuperates. It's 10:30 now and we have a 6:15 appointment in the morning. Ugh.
We met with Dr. E today, after a quick little CT scan to see about the thickness of Riley's skull. Unbeknownst to us, they needed to see how thick his skull was so the doctors could insert pins to hold him in place. After all, like I always say, a few little screw holes in your skull is better than an accidental lobotomy. Good news. His skull is nice and thick (Marci's side of the family), so the pins/screws should be no problem.
Later, after a delicious cafeteria lunch of a chili dog, corn dog, Doritos and ice water, we met with Dr. E. Don't know what's going on with the hospital; you'd think they were giving away free Tickle Me Elmos or something. That place was hopping.
Anyway, at the meeting with Dr. E, we had agreed to let the hospital (or, "hosibol" as Haley and Riley say) film us for the Chiari Syringomyelia Foundation and for study.
Say, I wonder if that was why he was in a suit and tie today....
So the meeting went well; he basically went over the basics again and explained what he was going to do. Riley was a nutjob. He's addicted to my and Marci's BlackBerrys. All he wants to do is play BrickBreaker!
The guys filmed us and we did our best not to be divas for the cameras. Evidently, they'll be filming the surgery tomorrow too, so for the stout of stomach, maybe I'll put up some videos? Or, maybe not.
Keep checking back for updates. I'll try to do them as time permits. I don't think I'll have computer access at the hospital, but I'll use my big brain to remember stuff to write.
Thanks to our friends, old and new, and family for all the support. It's freaky to think about, but we're bettering this dude's life and that's what's important.
Sunday, November 2, 2008
More thoughts
Crossposted from So Yummy:
According to Riley's countdown timer, we have 1 day and 12 hours left until his surgery. In other words, the day after tomorrow. Here's something I wrote at Gaming Trend, a website I frequent. When Dad died, I wrote there a lot and they were great for me. Some of what follows is redundant, but not everything I write here goes there and vice versa.
Also, I cut all of Riley's hair off tonight, just before T&J arrived. Shaved him down with a #2 all around. Luckily he's a handsome little dude, so the high n tight doesn't look bad on him. On me, I look like a black q-tip. It's lame. But it was almost emotional for me to shave his head. Made Tuesday that much more concrete for me. I took some pictures, but they're on Marci's computer. I'll have to upload them later.
I also busted out the video camera for the first time since Rye's birthday. Shot maybe 20 minutes of video today, just goofing around, things like that. I know that this surgery isn't going to affect his personality or who he is, but, until I see that little dude back to normal in a few weeks, I'm not going to take it for granted.
One last thing: I'm not one to complain (usually), but what's with the drama the past 2 months? First Dad, then this horrible economy, which is really affecting work, then Riley's surgery and someone resigning from work on Friday? Can a brother get a break sometime? Add in Marci's recent mystery allergies and her back going out, plus Haley's daily drama about something and it's a wonder I haven't ran for the hills yet. Thank goodness for good ganja.
Just kidding. I wouldn't know how to smoke it if you gave me a joint and a lighter.
That's it for now. I gotta finish up before the in-laws head downstairs to their temporary home for the next few weeks. I'll probably be posting here and at Riley's Blog as well, so forgive me for duplicates. In the meantime, hug your kids and keep Riley in your thoughts.
According to Riley's countdown timer, we have 1 day and 12 hours left until his surgery. In other words, the day after tomorrow. Here's something I wrote at Gaming Trend, a website I frequent. When Dad died, I wrote there a lot and they were great for me. Some of what follows is redundant, but not everything I write here goes there and vice versa.
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.It's funny. When Ted and Judy arrived tonight, the kids went nuts. They were super excited to see their grandparents. It wasn't until a little later that I saw Rye and Ted goofing around and I started to get a little misty-eyed. It was so great to see Rye with his grandpa, but so sad at the same time.
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.
Also, I cut all of Riley's hair off tonight, just before T&J arrived. Shaved him down with a #2 all around. Luckily he's a handsome little dude, so the high n tight doesn't look bad on him. On me, I look like a black q-tip. It's lame. But it was almost emotional for me to shave his head. Made Tuesday that much more concrete for me. I took some pictures, but they're on Marci's computer. I'll have to upload them later.
I also busted out the video camera for the first time since Rye's birthday. Shot maybe 20 minutes of video today, just goofing around, things like that. I know that this surgery isn't going to affect his personality or who he is, but, until I see that little dude back to normal in a few weeks, I'm not going to take it for granted.
One last thing: I'm not one to complain (usually), but what's with the drama the past 2 months? First Dad, then this horrible economy, which is really affecting work, then Riley's surgery and someone resigning from work on Friday? Can a brother get a break sometime? Add in Marci's recent mystery allergies and her back going out, plus Haley's daily drama about something and it's a wonder I haven't ran for the hills yet. Thank goodness for good ganja.
Just kidding. I wouldn't know how to smoke it if you gave me a joint and a lighter.
That's it for now. I gotta finish up before the in-laws head downstairs to their temporary home for the next few weeks. I'll probably be posting here and at Riley's Blog as well, so forgive me for duplicates. In the meantime, hug your kids and keep Riley in your thoughts.
Getting down to it
Before the haircutI 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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