The whole purpose of our trip to Utah was for Cierra to have a 7-day video EEG done at Primary's. We checked into the hospital on the 31st around noon and got her all hooked up and settled in.
It was a LONG seven days. The staff at Primary's are great, but there is only so much they can do to ease the boredome of a 9-year-old stuck in bed for a week. Cierra really struggled for part of her stay, but she mostly held it together and did great. She did not like having 3 IV's placed, having the EEG cap put on and removed, not being able to leave her room, all the EEG testing (pinwheels, flashing lights, etc,)going cold turkey off her meds, plus having mulitple seizures.
This was as far as she could go out of her room.
One of her many bruises from IV sticks
The good IV they finally got in and her hospital buddy with her IV that Cierra got to put in :)
She did like the room service, playing video games, arts and crafts, bingo, visitors, therapy dogs, and meeting new friends.
Princess Cierra <3
Bubba, Cierra, Caden
Cierra and Caden
Kenzie and Cierra
All four kids together. It was not an easy week for any of the kids. Tyler really struggled being away from mom and dad.
Cierra with Daisy
Cierra with Elliott, her fav therapy dog
Kenzie picked out some new socks for Cierra to brighten up her room and her day
Finally, the cap and electrodes are off! Brushing her hair for the first time in a week.
Heading down to her MRI
Back from the MRI with a balloon
Cierra's door, even though she's not really a falls risk
After a bath...yay!
Finally discharged and ready to go home!
On our way home! What a week!
We still don't have tons of answers. They stopped all of her meds while we were there and they were able to catch some seizures, but they are still not 100% sure if they are focal or generalized. They appear to be generalized, but she has a brief electrical burst in her right temporal lobe right before her seizures start, so there is some confusion about whether or not they are starting there and quickly turning general or if they are just generalized from the beginning. We are going to be doing a MEG scan sometime this week and that will hopefully give us some better answers. They sent her home on a new med (Keppra) and I'm not sure how long she'll be able to stay on it. She is having some yucky side effects and not really acting like herself. We'll give it a couple more weeks and see how she does.
They did another MRI while we were there and they still see the same issues, what they believe is an arachnoid cyst in the left side of her brain and some thickening in the area surrounding it, but it basically looks the same as three years ago, so it is unlikely to be the cause of her seizures. If it were growing or changing, they would be more concerned, but as long as it stays the same, it's nothing to worry about.
So that's our update for now. I hope to have some better answers in the next few weeks and I'll post again then.
One of her many bruises from IV sticks
The good IV they finally got in and her hospital buddy with her IV that Cierra got to put in :)
Bubba, Cierra, Caden
Cierra and Caden
Kenzie and Cierra
All four kids together. It was not an easy week for any of the kids. Tyler really struggled being away from mom and dad.
Cierra with Daisy
Cierra with Elliott, her fav therapy dog
Finally, the cap and electrodes are off! Brushing her hair for the first time in a week.
Heading down to her MRI
Back from the MRI with a balloon
Cierra's door, even though she's not really a falls risk
After a bath...yay!
Finally discharged and ready to go home!
On our way home! What a week!
