Friday, March 21, 2014

Video EEG!

Super Owen waiting to get his EEG leads
Super Sidekick Brenna had to test Owen's cape
We checked Owen in for his EEG Wednesday morning. Our neurologist wanted to see how his brainwaves were handling the recent medication reduction.
We had to check in at 8:00am and Owen usually gets his first meal at 9:00, so once we got him all settled in our room, it was time for breakfast. Owen has had pizza for breakfast every morning for the last 3 weeks.
All ready to start
Then the EEG technician came in and started the hour and a half  long process of attaching his leads.
They start by measuring his head and making red X marks at all the attachment points. Owen thinks this part is pretty funny.
Then they start gluing on the leads. This part is a little more tedious and the adhesive STINKS! First they have to clean the spot, then they hook up the lead and apply a glue coated gauze strip over it, finally they use a little drying tool to harden the glue. Owen really likes the dryer, for some reason. It must feel good.
I guess the whole thing was pretty relaxing or incredibly boring, since Owen fell asleep about halfway through.
Once all the leads are attached, they wrap his head in gauze and top everything off with a stocking cap. Then they hook everything up to the monitors and start filming.
After that comes the hard part, keeping Owen occupied in bed (he can move around a little, but needs to stay in camera and cord range) without undoing his headgear for 24 hours.
He painted pictures, including a picture of Barkley, Grandma's service dog.
He was able to sit by the window where we (we meaning Owen, his two Skylanders, his stuffed bug, and I) played Eye Spy for about three hours. Unfortunately, I became bored with that game long before Owen did. It might have had something to do with the fact that Owen, the Ding Ding guy, the Boing Boing guy, and Bug each got two turns for every one turn I got.
The scratch on his face was from falling out of the hotel bed the night before


Rod stayed at the hotel with Brenna, Morgan, and Duncan, so they could come visit. Since we live about 3 hours from the hospital, the little kids (except for Brenna) hadn't been able to visit any of the other times. Morgan and Duncan have a lot of anxiety issues about Owen being in the hospital and Mom and Dad being gone, so we thought that coming along this time might help.
The last two times we were at Swedish, Owen had cute patterned pillowcases on his bed that he got to bring home with him. This time he had this beautiful quilt instead! Only being Owen, he was upset about not having a pillowcase, so they gave him one of those too! They even found some more for the other kids.

The stocking cap didn't make it the whole time
Owen wanted me to sleep on the pull out bed next to him, but around 2:30 AM, I woke up and realized that he wasn't in his bed. I put my glasses on quickly and found him standing on the far side of his bed with his cap off, his leads disconnected, the pulse ox monitor on the floor, and two of the EEG leads loose. I guess he woke up and couldn't find me, so he decided to get himself out of bed and look for me. For some reason, none of the alarms went off, so I had to call the nurses in to hook everything back up. I spent the rest of the night in bed with Owen so we wouldn't have a repeat.
The next morning, they came in and used a special solvent to remove the glue and special soap to remove the solvent. It will take a few days for everything to come out of his hair though.
Unfortunately, Owen is allergic to plastics and adhesives, so this is what he looks like after only 24 hours of being taped up. There were only a few places where the skin was broken this time at least. After his 6 day EEG, he had oozing, bleeding sores all over. His hair has never grown back all the way in a couple of spots.
Riding the car around the ward while we packed up

It's been about 5 weeks since we started weaning  Owen's Onfi dose. Rod and I had noticed some troubling issues and were getting worried that the med wean wasn't going well. Owen has been doing a lot more of his "twitching" at night and he's having a lot of coordination issues again. The results of the scans were pretty much what we were afraid of. There were no seizures, but he had a lot of abnormal spike/wave discharge activity. So, we will be going back up on the Onfi and changing his Ketogenic ratio from 3:1 to 3.5:1. We are pretty sure that the seizure activity was under control with the diet AND the medications, but we're trying to see if upping the diet will enable us to start eliminating medications. At this point, I'm perfectly happy with seizure control any way we can achieve it. The long term goal is still to get seizure control with the diet alone and changing ratio might help with that. We'll be going in for another EEG in about 3 months and make more decisions based on how that one looks.












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