Tuesday, November 04, 2008

Riley's Surgery

Crossposted from Riley's blog:

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.