They want her sleep deprived. Honestly, I think we're always sleep deprived! LOL We had to keep her up until 11 last night, which was torture. She was so tired. Pulling out her hair, screaming, trying to pull out my hair. Then we had to wake her at 5 this morning. YAWN!
They planned on sedating her with 500 mg of chloral hydrate for the test, which is the same dose she gets every night at bedtimme. That would not work for the EEG. She is used to that dose, and wakes up easily with it. So they are giving her a double dose, plus a double dose of Benadryl. This is a lot of sedation, so they are putting her on oxygen and cardiac monitors for the EEG. A doctor will stay on the Pediatric floor of the hospital and not leave, and a crash cart will be outside the door. They said they will be ready to intubate her at a moment's notice.
Not very reassuring! I hope that the EEG at least shows what they need to see. She hasn't had a major seizure event like the first one, but we are seeing weird things that are possibly seizures, quite often.
Please keep my Peanut in your thoughts. We need the sedation to go smoothly, with no intubation, and her waking up quickly when it's over.
This stuff never gets easier on us moms, does it!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
8 comments:
Wow, thats quite the cocktail. They always want Jax sleep deprived. But if he doesn't sleep thats ok, they still see what they want to see.
Yikes, nothing is ever easy for our kiddos, is it? You and Peanut are in my thoughts and prayers today.
Yuck! EEG's are NO FUN! I pray that everything goes smoothly and that all of you can get some much needed sleep tonight! HUGS!
Sending prayers your way!
praying, hope it all goes smoothly
I'm praying, too.
EEGs are never fun and do not really even give a good picture of what we actually see at home.
Our son has been dealing with seizures since he was a newborn (now 2 yrs old). We always video tape them, small or big. I carry the camera around with us. Then we show them to the doctor. It helps us not feel crazy; like we are looking for something that isn't there or is. It has been a huge help with his neurologist. He has had many EEGs never showen a seizure during but does show lots of abnormal activity. We also chart his seizures, like duration, what it looks like, how and when it happens. Take all of that to the doctor and it helps...alot.
Praying for you and some answers.
I hope everything went well today? You both are in my thoughts.
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