Noah: Better But Not Back

Wednesday night was a beast of a night. I have gotten many texts and messages since, and I am so grateful for each and every one. I'm sorry for not getting back to everybody.

For anyone who has not heard, Noah started having some seizures, and then they would not stop. Once we hit about 15 minutes of them coming in quick succession with a few dips in between, without him fully regaining consciousness, we decided that was it and they were not going to stop. Off to the ER. By the time they were finally stopped at the hospital, they had been going about 35+ minutes straight. He is doing better now, slowly moving back to normal-ish.

That's the basic summary.

That boy has an exceptional team of guardian angels. It was around 9:30 pm that we heard a thud against his door. He had been asleep for close to 3 hours by then, which is pretty typical, so hearing him at that hour is not at all normal. He kicks or bangs on his door in the morning to let us know he's up, but he doesn't do it at night. One lone thump is unheard of. Jeremy ran down to check on him and sure enough, he was having a seizure. I ran down too. We have some things we do that normally slow down or stop the seizure, but nothing worked. We prayed. These seizures were odd, too, he was having movements we had never seen before, and we have seen pretty much everything as he has had every type of seizure there is. It was really unsettling seeing something brand new. The other strange thing was, he was silent. His seizures, at least the longer or stronger ones, are always accompanied by some sound. He grinds his teeth sometimes, or makes some sort of choking gagging type sounds. We have a baby monitor in his room and you can hear him if he breathes deeply on that thing, so there's not much we miss. But here he was having violent, world rocking seizures, and he was silent. I don't know how or why he got over to that door, but had he not hit it, we never would have known the horrid experience he was having.

It was hurried when Jeremy and Noah pulled out of the driveway. And though I had kissed Noah and put his favourite blanket on him, and told him how much I loved him, I still felt sick as they drove away. The other kids were all in bed, and I felt helpless. I sat on my kitchen floor and cried. Then I called my mom. I asked for prayers on Facebook. And there was that fear in the back of my mind, what if that was the last time I see him, like that? Permanent damage to his brain could completely alter him, or his little body might just give out...

He had a blood draw that he was too out of it to even flinch at, and then they had him hooked up to this and that, and had to do a catheter on him, so by the time they got home at around 1 am, he was totally wiped out, but also totally ticked off. Jeremy slept right beside him all night, just in case, but he slept until 11 am without incident.

The main reason nobody heard from me yesterday is that I was following this boy around almost all day. He wanted to be up and about a bit, but his body was not ready for it. He was speaking in whispers, only a syllable or two at a time, and it took effort to get it out. He was like the worst falling down drunk whenever he moved around. He stumbled and ran into the wall at least three times, fell down a couple of times, and I caught him twice on the stairs when he lost his balance there. He was white as a sheet, with massive circles under his sunken-looking eyes. We had to near force-feed him his usual green drinks to try to get some of his strength back, but he wasn't happy about it. By 5 pm he was heading downstairs, saying "Bed? Bed?", and he wasn't kidding. He went right to sleep.

This morning he had another, albeit smaller, seizure. He was talking a bit more, a bit steadier on his feet, still not really eating much. Then he had over an hour of 2-5 second seizures this evening. ((the mum pulls her hair out)) I'm guessing there will be a change in medication next week. He's sound asleep now.

A few have asked how we parents are doing. I can only speak for myself, but I am a weird combination of exhausted, wired, stressed, relieved, overwhelmed, frustrated, grateful... nothing prepares you to see your child like that. It is not something you just 'get used to'. I love that little boy so much, every part of me cries out for his relief, and wishes I could take it all on for him. The messages and words from so many family and friends have been what has held me up these last 2 days (did I mention I had had a rather horrid 24 hour bug just the night before all of this? And that we'll pay for the ER out of pocket? And that our dryer decided to die yesterday?). The love flowing in for my boy has been nearly palpable. For the rest of us too. I am so thankful. I know Noah feels it. And right now, that's everything.

My Kooky Little Sage

At the moment I blog periodically just so that people don't start to wonder if I have ceased to exist. It's a shame because I enjoy blogging, I enjoy writing, but I don't seem to be able to stay on top of much of anything these days. We're coming up on 15 months of not sleeping through a single night. It has depleted me more than I ever could have imagined.

I don't like to come on here and complain. I also really don't like feeling like I'm in my eighties. So I'm afraid you'll have to just deal with a bit of complaining. Waah. There.

Yesterday I picked Noah up from school and he was grinning and bounding around, and once in the car, singing along (in his own special way- it has to be experienced, not explained) with the Lazy Town cd that was playing. He had let me give him a quick squeeze and kiss on the head before going in that morning, as well, so I found myself smiling through the rest of the carpool routine and drive home. This has not been the norm for Noah for some time. For months he has not been quite himself, a bit slower than normal, not eating well, fewer of those days where he is just full of beans and all wound up. His neurologist said he could be having lots of seizure activity that we can't see on the outside, on top of the too-frequent bits we are seeing. Or, she said, or, it could 'just' be general deterioration of his brain due to all the seizure nonsense since they began four and a half years ago.

Oh. Is that all?

We need to have another EEG done to compare to the one he had right after the seizures started to see if, in fact, there is permanent damage being done to his brain. If so, there is not too much to be done, so it's not an emergency type of thing. But it would be helpful to know so that we have a clearer picture of what is happening, or not. I've said it before, but seizures really and truly bite. It's an area doctors really don't know anything about, it's everybody's best guess as to what's going on, which means treatment is throwing darts and hoping one sticks. It's medication roulette, if you will. It's a hoot.

Noah regularly teaches me and reminds me of what is important. A day of feeling pretty good is a big deal, not to be taken for granted. You never know how much time you've got with anyone you love, so even the junky days are a blessing. Noah can go through stretches of absolute misery, pain, and sadness, but the moment he feels pretty good, he is up, smiling, swinging outside, gleefully chucking water at some electronic device, loving life. He doesn't dwell on or relive or complain about those bad days. He is amazing that way.

I'm trying to, in my own way, follow Noah's example, which is why I am upright and tidying up after dinner rather than laying on my soggy lawn with my head through the fence letting loose a scream of utter ballistic exhaustion. Meanwhile, we will get Noah checked out, and hope the news is that he will be as present and communicative as he manages to be right now, for a good long while.

I adore that boy. I am so blessed to be his mom.