We know from the past that the shorter your hair can be for the extended EEG the better!
JB went ahead and took care of the hair cut at home.....he did a really good job!
Levi and I checked in on Monday at 8 am to start his EEG stay. The stay was scheduled from Monday to Friday. Depending on the information the doctor gets, how quickly she gets it, and how different each seizure appears depends on how soon he is discharged.
Technically this testing is Phase 1 for tuber resection surgery. We are not considering the surgery option even remotely yet. We are praying and having faith that Levi's seizures can be controlled with medications and he will outgrow them quickly and going on to be without medication one day.
However, having this early information of finding the location of the origination of the seizure helps should medication fail. We learned with Jace that as seizures progress they can go from very focal (one spot in the brain) to generalized (all over the brain) making it hard to find the spot that is the true culprit without more invasive tests. That was one of that main reasons we had to do grid placement on Jace before they removed the suspected tuber.
Ready to check in for the week!
Waiting for the EEG techs to come hook him up he asked to watch TV.....and it was Golf he chose to watch. SO much like his daddy!
Levi was so brave getting the "stickers" on his head. I was worried we would have to papoose him like we had to Jace. He wasn't scared of the air they have to blow for the glue to dry and he laid there nicely for Mr. Luis.
Such a little trooper!
I can not say enough good things about the pedi EMU! Everyone we encountered was so refreshing. I think these people actually like their jobs - talk about making a difference in the care received!
Mr. Luis was great at getting the EEG hooked up for Levi. Those two became buddies over the stay!
Our day nurse was Ms. Claire. She had the cutest English accent and was so good with Levi. He listened to her and she was able to convince him to do everything necessary - even get his IV.
She is a one of a kind nurse for sure!
All hooked up and holding his "Topper"
I was dreading having to occupy Levi in a little hospital room for more than 1 day but come to find out they have the ability to allow EMU patients to play in the huge playroom now!
They have a wireless box for the EEG and a camera in the playroom. We spent a lot of time in there.
That is how Levi and Mr. Luis became such buddies. Ms. Claire would have Levi call Mr. Luis to come hook him up the playroom set up. Levi would kindly ask "Please play in the playroom please?" and Mr. Luis always came right away.
We were able to pass some time visiting with my BFF Diana! She works in the hospital too and stopped by during her breaks. I love seeing her!
She made the stay much more bearable for the both of us. She gave Levi a Spider Man stuffed ball - talk about genius! He loves to play catch and this was big enough to catch with his IV in and soft enough to not hurt anything or anyone. Plus she totally spoiled me with a Starbucks coffee :)
We had a lot of playroom time, visiting with Diana, and snuggling!
The iPad and TV were great for waiting for his food to get to the room or falling asleep at night lol
He is such a mover!
We did FaceTime a few people........Jace and Levi really missed each other and loved being able to see each other and talk.
The first night the dr asked for Levi to be sleep deprived. He had been up early that morning and then didn't nap at all........then they wanted me to try to keep him awake as late as possible (I think they said midnight was their "goal") Despite getting a huge car track mat to play on, Levi could only make it to 10 pm. They said that was pretty good since he was only 3 years old and used to going to sleep around 8.
Toys and Food = Happy Boy
The next day we were given a huge basket from a ministry called "Baskets of Hope"
There were so many toys and goodies in there for Levi and me. What an amazing ministry!
That basket helped keep Levi happy at the hospital and will give him fun for long after the stay.
He wanted to color and he started to write "L's"! I was so excited! He is going to pick up on the writing quickly I am sure!
Back to the play room to work on his basketball and puzzle skills :)
Today again I was told to sleep deprive Levi.
It was pretty difficult to do! He was getting SO sleepy!!
To get Levi's mind off sleeping I got him up and practicing his letters.
I am impressed with is tracing!
Tuesday night we were allowed to go to sleep normally. It still took him a bit to fall asleep but when he did, he was out!
Wednesday we were given the news that we get to be discharged!!! YAY!
First they wanted to give him his new medication via IV. After trying they noticed his IV was kinked. While trying to fix the IV it came out. They managed to start another on his other hand but he was so upset that before they could fully tape the IV down he pulled his hand back and it came out too! UGH! Poor guy was so upset!
Thankfully the doctor said he could take the loading dose orally! No more pokes!
He was so ready to go home! He laid still to get the leads removed by Mr. Luis and we were out of there!
So far, the increase in his Trileptal and the addition of Keppra has control his seizures.
Praying this continues to be the answer!
