In Which Connor Has Another Seizure

Today was not a very good day, unfortunately. Connor had another seizure-- his longest ever-- and we had to use his Diastat for the very first time.

Jer's brother was coming in to visit us for the weekend, and it was about five minutes before I had to leave to pick him up. I was getting Connor's stuff ready to go, and noticed that he was making some strange grunty/wheezy noises. Connor was sitting in his chair next to Jeremy, and he was looking down at his feet. I asked Jer if he was okay. Connor would still move his arms and legs and was still responsive, so Jer said that he thought that Connor just "needed to go potty." After two or three more minutes of listening to him I came over and lifted him out of the seat.

Connor was still responsive-- he would track, blink if you blew air in his face, etc, but he seemed to be having some difficulty breathing. He was also really, really drooling, as if he wasn't swallowing at all. I got him a new diaper and went to change him, but he was totally dry. Something just didn't seem right. A few seconds later his jaw started to tremble and we knew he was having a seizure.

I set him in Jer's arms and ran for his oxygen. After we put his nasal cannula on he stopped having trouble breathing, but the trembling progressed into a rhythmic jerking of his jaw. He was still weakly tracking and could move his arms and legs. Jeremy grabbed the camera and started video taping so we could show the neurologist what he was doing.

We didn't really have any instruction on what to do here-- it was kind of a judgement call. Normally we'd administer the Diastat two and a half minutes into a seizure, but normally during a seizure he's not breathing, which wasn't the case here, so we weren't sure if we should give it at the same time or wait a while longer. In the end we waited until after he'd been trembling and/or jerking for five minutes. Right before I gave it to him he stopped breathing and went unresponsive and blue on us. I did rescue breathing until he came back, but I didn't have to do it very long as the seizure stopped about a minute after I gave him the medication. We're unsure exactly how long the whole incident was, but from the time I noticed him making the odd noise to the time he started breathing again it was probably somewhere around eight minutes.

We were told to call 911 any time we had to use the Diastat, so Jer did that while I performed rescue breathing. The EMTs came and checked him out. Since he was breathing well (breathing is a potential problem with Diastat, which is a respiratory depressant) and we seemed to know what we were doing they decided he could stay at home rather than going to the hospital. Connor has been asleep ever since.

Of course it's a Friday. Also Connor's neurologist is out of town until the end of next week. And we have no more Diastat. This is not a wonderful situation to be in, but we'll work on it. What this means, though, is that Connor's current medication is no longer doing its job. That is a scary, scary place for us to be.

Please keep Connor in your prayers as we try and figure out where to go from here.

~Jess