7-24-12 through 7-26-12 EMU Stay

So we headed off for another stay in the EMU. The child life staff at our hospital is so awesome. Evan got to have the iPad for about 2 hours.

This really helped to keep him occupied while he was being hooked up to the EEG. Evan is such a trooper. He just goes with the flow so well. He did not even fuss when he was being hooked up to the EEG. I know the iPad helped a lot with that but a lot of it was Evan as well. He knew the tech from our last stay and he did well with her that first time as well. There is one EEG tech who has hooked him up before and I think she scrubs too hard so he just cries when she walks in the room. I was so glad we did not have to put him through that this time.

Being in the EMU can be tough because it involves a lot of sitting but Evan does OK. We do take trips to the vending machine and to the playroom.

So now for the nitty gritty information. Evan's EEG was very active on our first day. So the Dr. ordered a steroid via IV. I will give Evan and the IV nurse a thumbs up for both doing such a great job. The night time EEG shows a lot of activity. So during Tuesday night Evan got an IV dose of Keppra and a regular gtube dose of Vimpat. Then he got a 2nd dose of Keppra. Wednesday morning we noticed a major improvement on the EEG. This was exciting. So we officially started the new medications and held 2 of his other meds. I still noticed quite a few seizures on Wednesday but the EEG looked much better in between the seizures. Wednesday night he got another dose of steroids and a big dose of his clobezam to help break the cycle at night. Thursday morning his EEG was looking so awesome. We were able to go home.

Evan was so happy to get his EEG leads off. He was happy to be off of the EEG tether as well. We hung out for a while after he was unhooked but soon we were heading for the elevators and home.

Evan helped carry some of our many bags.

So we went home on Thursday afternoon. I had not seen seizures all day. I was hopefull that we may have found good control. Then we get home and I am setting up his new car toy and bam- seizure. That night he had a few but I was OK with up to 5 in a day compared to the 20 that he was having. Friday they started coming back with a vengence. Friday night he had a ton and I was going to call the dr. but thought I should give his meds and put him to sleep and see what the next day brings. It was late and he was due for his meds.