Collin's seizures really slowed down last night, though they never fully stopped, so Kyle and I decided that it wasn't worth it to brave the emergency room and tried to get a little sleep instead, taking turns checking on Collin throughout the night. When I got up with him at 5:30, he had started having them more frequently again. We called the neurologist and got permission to give Collin's morning meds a few hours early, along with an extra clonazepam with the understanding that if it didn't work within an hour, we needed to go to the hospital. After an hour, he was still having seizures every 5-10 minutes so we packed up and called the neurologist to let them know we were coming in.
For some reason, the nurse practitioner decided to call the neurologist who was coming on call (Dr. Awesome) to see if there were any other routes we could take. He gave us three options: 1) Be admitted to the hospital and try to start the ketogenic diet even though Collin is on continuous feeds right now; 2) Start a new drug (Dilantin) on top of the Keppra - this would require some blood work; 3) Increase his clonazepam - this was not really intended as a treatment, since they predicted it wouldn't work on its own; it was more to give us some parameters for doling out that med without having to call every time.
I hung up to discuss the options with Kyle and as we were making our decision, Collin fell asleep in Kyle's arms. Kyle was afraid to move, since Collin has the vast majority of his seizures in the early part of sleep, so he was stuck in the rocking chair, trying not to budge. After an hour, he was able to lay Collin down and hook him back up to his feeding pump without waking him up. Then he slept for over four hours and woke up without a seizure. Now he seems to be feeling much better and is smiling and interacting. We're going to continue with his current meds and pray that they start doing the job. Otherwise, we'll be heading into the hospital. How many times have I said that?
Also during all of this, we've been dealing with the fact that Collin hasn't had a bowel movement since Wednesday because of the barium he had to swallow for his x-ray study in the hospital. I'll spare you the details, but it has involved lots of calls to the pediatrician, glycerin suppositories, and close diaper examinations. You know, just to spice things up.