Sunday, November 02, 2008

More heavy stuff

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.

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.
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.

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.

After the haircut