Sunday, July 21, 2013

Long night

We are up. All night long.

The Ativan drug totally jacked her up and makes her crazy emotional.

She hallucinates on it.  She won’t stop talking.  She didn’t sleep at all. She seized all night.

When your child is "bad" I found they bring in a nurse to sit with you the entire night. This was after I "caught" Josie trying to get of bed.

Head first.
I was laying the couch trying to rest and I opened my eyes and she was hanging upside-down out of her bed. I jumped up. The blanket got wrapped around my ankles and I tripped and I screamed.
3 nurses were in our room in a split second.
So yeah.....after that Nurse Kylie stayed in our room with us.

Jo is so agitated. It is miserable. Her speech is so slurred I can’t understand her.

The Josie of “old” is gone.  They tell me it is all the drugs and I sure hope they are right.  Becuz right now she can’t communicate nor is she continent.  She is in “special pants.” Meaning diapers. I never thought I would be changing Josie’s diapers!  Guess I’m making up for lost time! Winking smileWiping a 10 year old’s butt  is so not near as “fun” as a newborns butt…..

They are doing an EEG this morning. She is first on the docket.  I hope it gets done soon.  I really think it will change anything though.  They are brainstorming to see what other medicine we can try.

Right now I’m ready to just stop them all.  I am going to ask about option when the neuro comes in.

We are not able/up to having any visitors at this point. :(
She will be hooked with the EEG (hopefully) is in our room and it is videotaped.
She is still having seizures. Even with these crazy drugs that are supposed to stop the seizures she is seizing.  Not as long or intense but still seizing.

The doctors are stumped.
Thanks for praying.
We aren't breaking out of here today :(

2 comments: said...

I've not commented in awhile, and I'm hardly up for doing any blog following at the moment anyway - yours is one of the very limited exceptions to that rule - but I've been staying up with you guys, checking every few hours for any updates.

I'm so sorry all this just keeps getting more complicated :-(

And what incredibly frightening/challenging/heat-breaking things to keep have happening on top of one another and in such a short period of time.

Many, many, many prayers from the other side of the country, as that's all I can do (and I do realize it's the most important thing...I just always wish to be able to do tangible things on top of prayer!)

Anonymous said...

We are praying for all of you. Sweet Josie!! It hurts my heart to think of her in this place. Sending love, J, R, R & J