Open Mouth, Insert Foot

And I was just saying how well we were doing....

Cole has had a couple of weird days. I mean, weird. It all started with an increase in myoclonics. OK, we know Dravet changes all of the time, we roll with it. Monday was still Spring Break, Tuesday was therapy, so Wednesday was his first day back in school in two weeks. I decided to do something good for myself. The last few weeks have kind of wore me out. Low and behold, Dravet wanted to remind me that I can not go anywhere within a two mile radius. It doesn't matter what I am doing-the beast is always there. By the time I got to the school, 35 minutes after the relatively short seizure, you would have NEVER known that something had been wrong with Cole. He was slurring his words a little with the Versed in his system, but he was sitting at the table doing a puzzle, talking up a storm. Plus, Slugger alerted 45 minutes before! This is his 4th consistent alert 45 minutes ahead, so we think that is his "window". Cole did not seem any worse for the wear, Slugger had done his job...it was all good. Well, good as it can be after a seizure. I packed up the boys and took them home. Cole continued to have lots of myoclonics, which is once again, weird. Usually after we give him Versed, he is good for a couple of hours at least. I go to the dentist (hooray! I might need another root canal). Cole continues to cluster, so they give him more meds. He wakes up twice in the middle of the night.

Thursday rolls around, Cole wakes early, that is fine. We have a wheelchair evaluation and I was going to get him up anyway. Wheelchair guy comes, gets the little man all measured. Cole is doing awesome, hardly any myo's and they are spread apart. So, I send him to school! As this is my first true day at home in weeks, I finish up a post for next week (you will find out how de ja vu it is later), do laundry, catch up with my DVR simultaneously and clean a little for a couple of hours. Then I get a call from the nurse. She lets me know what is happening and that Cole is fine. I jump in the car and head over-much quicker when I am 2 blocks away. Nurse tells me that Cole was having so many myoclonics that she gave him a small amount of diazepam in his g-tube. About 3 minutes later he started to have a full-blown tonic-clonic. She gives him Versed. It stops quick, she calls me.

By the time I got there, he was loopy, but talking. Nurse tells me that Slugger got off of his place twice, then had a light bulb moment that he was trying to alert. This is her first time alone with Slugger during a big seizure, so she is still getting used to alerting. She also said that Cole kept on trying to go over and lay with Slugger. This is good! I talk to her some more, give Slugger lots of treats for being a good boy. Check out Cole more thoroughly. I notice he is blind. Oh, great. Then as I pull him on to my lap, I notice his left leg is jerking. He is not done! He has a complex-partial seizure, I give him more Versed. The whole time his oxygen is going up and down. Leg stops. So I think we are out of the woods and try to settle him down (he hates Versed with a passion). Slugger alerts, again. Okay? Still blind. 5 minutes have gone by (almost an hour since the whole thing started). He goes stiff, then limp. I notice his eyes are not just deviated anymore they are actively twitching and moving back and forth rapidly. Geezo! So, we give him Diastat. At this point, he has had myoclonic, tonic-clonic, atypical absence, complex partial and tonic seizures...within an hour. Our personal protocol is to go to the ER after 4 doses of rescue meds. I get to the point where I feel he is stable and I situate him in the wheelchair to get him to the car. Slugger then alerts for a THIRD time, and he will not back down. He is putting his head under Cole's legs, nuzzling him like crazy, licking his hands because he can't reach his face, nuzzling my elbows and practically tries to jump into Cole's lap. Alright buddy, I get the picture. We are going to the hospital. Cole started to drool in the car and got goosebumps, so I knew that he was still seizing. We headed to the ER.

This is getting to be the world's longest post, so I will break it up!
Cole and Slugger in the ER trauma bay