Thursday, February 21, 2013

Here I Am, Moving

So, I've skipped every single weekly feature I assigned myself over the past few weeks and I've been feeling kinda bad about neglecting this here blog. So. Here I am.

When I disappear from the Internet, or parts of it anyway, I always imagine what people might be thinking I'm doing. "Has she run away with the circus?" "Gotten divorced and thrown all of the technology out the window in a fit of man-and-computer-hatin' rage?" "Is she dead? And if so, will her ghost start ghostwriting on her blog to help us solve her murder???" I realize, of course, that anyone who didn't give birth to me probably doesn't give a 2 week gap in blogs from me that much thought, but, you know, what fun is it to be a realist when I could be an egotist instead?

The truth is that I've actually sat down to blog several times and just haven't managed to. I either set out trying to write something goofy and it ends up sounding forced because I know people know I'm dealing with some real shit right now and they're going to think I'm just putting a brave face on, or I sit down to write something serious and it ends up too maudlin or it depresses me, so I stop.

It's a super-weird thing, waiting for medical news that might be bad (tumor) or not so bad (treatable infection) or not news at all (epilepsy, dur). It's especially weird when that news or not news will be about your child, and he's currently cheerful and snuggly and generally not looking at all sick other than having more trouble walking than usual. I'm busy and stressed and happy and calm and angry and worried and bored and contemplative by turns and for large chunks of the day I often forget about the whole my-kid-was-just-in-the-hospital-again thing entirely. And I know I'm not dealing with this, because, honestly, there's nothing to deal with yet and there may not be anything new to deal with. We already knew he has epilepsy. If the tests show nothing more than that, well, that's something I've already dealt with...sort of...

Because in some way you don't get the luxury to "deal" when you're a mom and something bad happens to your kid, especially when they're small and have a small sibling and there's still the massive load of day-to-day work to do - the cooking of meals, and the brushing of teeth, and the endless picking up of small socks (seriously, I know I don't put as many socks on their feet as are littered about my house every night. Where are the socks coming from?!). I can't fall apart for a weekend and lay in bed crying and watching depressing movies and killing off my Sims families in various terrible "accidents". And, if I did, not only would I feel massively guilty for doing so and depriving my kids of their mom, but I'd feel downright silly. That stuff doesn't help you deal with something like this. And my kid is alive and he has certain chronic medical conditions, but for all I know he's pretty darn healthy. Who the hell am I to wallow in bed covered in candy wrappers and smudgy mascara? Shouldn't he be the one wallowing if anyone's going to wallow? He's happy as a clam (if that clam enjoyed stimming on pieces of plastic fruit, that is)!

I get a lot of undeserved credit for being "strong" and "brave" in the face of all of this scariness and for going on with it all, but I'm here to tell you it's not strength that keeps me moving. It's fear and habit. I have to keep life the same. I need my routines and my identity as the superhero autism mom and I need to find things to do like sanitize every toy in the house or put Ry on a new diet that has me in the kitchen every day doing things like making almond yogurt from scratch or boiling a whole chicken for 4 hours and painstakingly shredding the meat in the soup into Ry-edible bites. I can't sit down and think or I'll start to get scared and if I start to get scared everything falls apart.

So I just...keep moving. Maybe when that MRI and LP come back next week I can stop. Maybe.

Thursday, February 7, 2013

I Am Rylan's Mom

Wow. I don't even know how to begin this blog. It will probably be rambly and long and sentimental so y'all have been warned.

For those of you who don't know, my Boog has been very sick. Last Friday, he started having seizures with vomiting around 4:30 p.m. and he just didn't stop. He had 10 seizures in 24 hours (the most he'd ever had in 24 hours before this was 3) and he couldn't hold anything down which, apart from the obvious risk of dehydration, was a major problem because we couldn't keep his anti-seizure meds in him. We hit the maximum daily dose of his emergency meds and then he had two more seizures in half an hour, so we knew it was time to go to the ER.

Note: If you ever want to feel like a VIP, rush into the ER holding a seizing kid. Folks in scrubs were coming out of the woodwork to pay attention to us, haha.

I felt much calmer once we got to the hospital. He had a long seizure in the car on the way there and he stopped breathing and his face began turning blue. I was crying and begging with him to come back and to breathe. It was terrible, just indescribably gut-wrenchingly awful.

He was running a fever that day which probably made the seizures worse. The ER ran a bunch of tests while they were working on getting him admitted and they got some fluids and Zofran in him and he finally stopped throwing up. A chest X-ray revealed he had pneumonia, or so they told me at the time. It turns out that it was a very small spot and the radiologists were arguing over it. One said it was pneumonia and one said it wasn't. Regardless, they began treating him with antibiotics and his fever did disappear after that, so maybe he did have pneumonia. Anyway...

He got a mega-dose of anti-seizure meds via IV on Saturday night and the seizures finally slowed down. We saw the neurologist on Sunday morning who was just going to release us and increase his meds. Um. No. I asked him to at least run an EEG, which he agreed to, and thank goodness he did. The EEG revealed major dysfunction in the electrical activity in the left side of Ry's brain. We had noticed during these seizures that the right side of his body was jerking and twitching and the left side wasn't and then after the seizures, his right side was very weak, and these symptoms fell in line with what the neurologist saw on the EEG. He was concerned and said, "Okay, we need to run an MRI and get a lumbar puncture."

Only...since he got that g-d controversial pneumonia diagnosis, Anesthesia wouldn't agree to put him under for the tests for 3 weeks so we couldn't get the tests done then. His lungs were clear and his fever was gone, so it's a total CYA thing. Annoying.

We got released Monday night and only as we were walking out the door did I notice the motor problems. Ry was having trouble balancing and his gait was off. His right knee was buckling slightly and his left foot turning in. After watching him for awhile, I realized his head was shaking slightly and his right side grip was weak. All courtesy of this hellish bout of seizures and whatever the heck is causing them.

On Tuesday afternoon I was alone with the kiddos and Ry was eating lunch. I left the room to put a toy away and I heard Pippa scream, "RyRy!" and ran in just in time to see Ry seizing and falling out of his chair. I couldn't get to him in time and he landed on his head. I settled him on his side and ran for his emergency meds. Once I administered those, it occurred to me that he had been eating and he could be choking while he was seizing if he hadn't swallowed before the seizure started. I tried to finger-sweep his mouth, but I couldn't get past his clenched teeth, so I sat him up and started doing the Heimlich maneuver. I did it several times while poor Pippa cried and asked, "RyRy? RyRy sick?". The seizure lasted five minutes which is the longest he's ever seized before. Definitely my worst and scariest moment as a parent so far. I wanted to run to the phone and call 9-1-1, but I didn't want to leave my boy. The seizure finally subsided and he started breathing normally, so it was obvious he wasn't choking, thank God.

I called the neurologist and spoke with his nurse who spoke to him. He couldn't even be bothered to get on the phone with me. That kind of rankled given what we'd just gone through, but I know this stuff is commonplace to him. He added a third medication to Ry's regimen and scheduled him an appointment for Friday and said if we had to use the Diastat again or Ry showed signs of concussion from the fall to go back to the hospital. The nurse then said, "Honey, I don't agree with Dr. G. If you don't feel comfortable, you take that baby to the hospital."

I decided to wait and see how he did over the next few hours, though. Surprisingly, after the major dose of elephant tranquilizer, he woke up after only 30 minutes and got up and began playing as normal. Usually he sleeps for at least 2 or 3 hours after a seizure. He still had the tremors and slight right-sided weakness he had before the seizure but nothing seemed worse, so that was encouraging.

Then, yesterday afternoon he started running a fever. It was a low fever, only 100.0 under the arm, but the pediatrician said to bring him in considering all he'd been through over the past week. They ran every test under the sun and everything came back negative. His lungs sounded clear, but his throat was red, so they figured he probably picked up a little virus at the hospital (irony, haha?).

And that brings us to today. He's home with me and he's playing and eating and sleeping and I'm happy. But he's also changed. He has tremors and sometimes he has trouble walking. His balance is worse than ever and he keeps trying to do things he used to be able to do like climb up on the end table (I know, parent of the year award, but it makes him so happy. We call it his "standin' table") and he can't and then he cries. He's extra-cuddly (and this is a kid who didn't want anyone touching the front of his body up until this week) and clingy and wants me to carry him around the house (which I am very, very happy to do regardless of the fact he weighs 34 lbs.). He's licking blankets and pillows and upholstery and rubbing his face against them. He's sleeping a lot.

We have no idea right now if these changes are permanent or temporary or what's causing them. I know that I want those tests like yesterday and I don't want him on 3 medications, so we'll be talking to the neurologist about that at our appointment tomorrow. We're looking in to special diets for kids with autism and epilepsy that can help control the symptoms. I've coordinated with the school nurse and Ry's teacher to keep him away from sick kids at school since Ry could have a serious seizure event like this any time he runs a fever now (he doesn't have febrile seizures, per se, he has epilepsy, but fevers can make it worse). I've coordinated with Ry's therapists to work on the new motor problems and to keep him away from sick kids at therapy and to change his schedule so he has a day off during the week because the neurologist thinks his brain may be getting overtired from working so hard at school and therapy 5 days a week since he almost always starts a seizure cycle on Friday afternoons or Saturday mornings if he's going to have one. I spent all day yesterday sanitizing every single toy and book and surface in Pippa's room (AKA the playroom) and I'll spend the rest of today doing the same in Ry's room and the other rooms of the house if I can get to them.

I used to think being a parent was lame. Even after I had Ry, I would make apologies for any "mom" behavior I exhibited in front of friends. I cried for a week when I had to quit my job because of Ry's special needs. I never wanted to be "just" a stay-at-home mom. I saw that as giving up, as settling, as becoming average and boring and out-of-touch. I was ashamed of not using my B.A. and ashamed of not going to grad school like I'd planned and ashamed of saying to people when they asked what I do, "Oh, nothing."

Can I just say I don't care about any of that shit anymore. I am Rylan's mom. Period. And he makes me proud to say that and just that. I was born to take care of this child, to be his advocate and his voice and his protector and the person who carries all 34 lbs. of him around the house all day because he wants his mommy. I can't think of anything more noble and worthwhile than this.

Boog in his EEG cap AKA Mummy Superhero 3000 hat at the hospital this weekend