So guess where we are?
I should learn not to mention the hospital in my blog posts, because I think I'm jinxing myself. We're currently sitting in the emergency room at Children's in Seattle while we're waiting for a room on the neurology floor to open up. We transferred here from the hospital close to our house about an hour and a half ago. This is because Connor had five seizures today. Five. While on Ativan.
He started off the morning with a five second seizure at school. I was concerned because the seizure happened almost an hour after he'd had his Ativan dose for the day, but we decided to keep him in school because he's been missing so darn much of it lately. So I left him there, went home and promptly called our neurologist clinic to leave a message with the triage nurse. Connor took a little nap in the classroom and then was okay for the rest of his school time. Then he came home and fell asleep again.
I woke him up so we could leave for his orthotics fitting appointment around noon, and we took off a half an hour later. We were trucking down the highway when Connor started slapping his hand against his knee repeatedly. I looked back and saw his eyes roll towards the ceiling. He was having a simple partial seizure; he was seizing but still completely aware of what was going on, and so he was trying to let me know about it before he lost all muscle control and couldn't move his arms anymore. I pulled over to the highway shoulder and hopped out of the car. This seizure lasted about two minutes, and he fell asleep again afterwards.
Since we were already almost to the appointment and we'd had to cancel it twice previously because of seizures, I figured we'd go ahead and just go to it. Hopefully we'd be able to finish it without incident and get home. Connor was an angel through the whole appointment despite being extremely tired; they made a plaster of Paris cast of both of his feet and his torso and he didn't pout once through the whole thing. I told him that he could have a new book as a reward and we headed for home. The bookstore is on the way back to our house so I figured we could swing by really quickly and pick up a treat for him.
We were pulling out of the bookstore parking lot when he had seizure number three: another simple partial seizure. This one was about a minute long. By this point I was getting pretty nervous because it was obvious that the Ativan wasn't remotely doing the job anymore, and the only other emergency medication we had to use at home was the Diastat. I called Jeremy to give him an update and then hopped back in the car and started down the road again. About three minutes later Connor started seizing again, only this time he stopped breathing.
So I yanked the van across a lane and into the Home Depot parking lot, where I zoomed into a parking spot, jumped out of the car, unstrapped Connor and started mouth to mouth. When we got to two and a half minutes without him breathing, I pulled out the Diastat and used it. He stopped seizing about thirty seconds later-- probably too soon for the Diastat to have kicked in. Then about a minute later his eyes rolled up and he started seizing again, which is when I called 911.
By the time the fire truck got there Connor had snapped out of it again and was snoozing on the floor of the van. We were less than a block from the private hospital (our first port of call when Connor has an emergency close to home) so I denied transport and just drove him there myself. Since we had now completely exhausted our emergency seizure medicine options and he'd had five seizures that day, I wasn't comfortable having him at home any more while we waited for the neurologist to call us back. So off to the hospital we went.
We sat in the waiting room for a grand total of about two minutes before they called us back. I've found that when you start sentences off with "my child has seizures that cause him to stop breathing" you get a room in the ER really quickly. The nurse who came out to get us recognized Connor and called him by name. This is how you know you've been to the ER way too often. After a quick evaluation they decided that Connor needed to be transported to a hospital with a PICU, so they started making plans to move us to Children's.
And here we are.
Connor hasn't had any more seizures, I'm happy to say. He's still twitching every few minutes while he's awake and he's tired as all get out, which I'm not surprised by given that he's stuffed to the gills with benzodiozipines. Right now he's completely zonked; the neurologist team just came in and woke him up to look at him, and he was falling asleep again as they were leaving the room. We're expecting to be here overnight at the very least; hopefully we'll be able to leave some time tomorrow after they adjust his medication. At least we're at a hospital with a couch large enough for both Jeremy and me.
And also they have Internet. Which is nice.
4 hours ago