Nobody said life with Bella was going to be dull.
Yesterday, we had a routine EEG to determine if we can take Bella off her seizure medications. Our EEG was in the morning, followed by a appt with our epilepsy neurologist in the afternoon. I had a bad feeling all day, and was just a general grump (you can ask Craig, he'll vouch for that one).
Well...
Bella's EEG showed multiple numerous uncontrolled seizures. To be more specific, it showed she was in the midst of a medical emergency called status epilepticus. Physically, I have NEVER seen and signs of seizure activity. Her previous EEG's showed abnormal activity, but they never showed seizures. They think her recent illness may have triggered something in her brain. I had no indications physically that she was having constant seizures. (I am definitely feeling a load of mommy guilt).
We were admitted to the hospital from the office. Definitely not in the plans for the day. We were/are two hours away from home, and not prepared (physically or emotionally) for an extended hospital stay.
For now, they are monitoring her continuously on an EEG. (Don't even ask me how infuriated it makes me that she had to go through the awful process of putting EEG leads in her hair twice, and 3 tries for an iv stick). I digress...The plan is to see what her EEG shows in a 12hr period, and then decide how to stop these seizures. In the words of her MD "this is very unusual and concerning."
Well, great.
I'm trying to hold it all together...but truthfully, I'm ready to fall apart. My poor little girl has been through so much, and it just doesn't seem fair. My poor boys are starting to think everytime we go to the Dr, Bella and mommy don't come home.
So...lots of good thoughts and prayers for us please. This is not what any of us imagined would happen.
Some days, Holland is just too hard.
6 comments:
Ah, Julie it's just crazy. I love love love all of you. I have people in Russia praying for little Miss Bella right now. :)
I am praying for you and your sweet girl. Rett Syndrome is cruel. I pray the docs get the seizures under control quickly. I can only imagine how scary all of this is. Hugs!
Julie, I have been reading up on Bella here for the last week or so. I am so sorry to read today's post. I know sometimes it feels like you will never catch a break. But you will get through this just everything everything else you've gotten through. It will get better. Sending positive vibes your way - Kelly (Julia's mom from BBC)
My thoughts and prayers are with you. I hope Bella goes home soon. One day at a time..
thinking of you and your family. keep us all posted.
Oh I feel just awful that I'm just now reading this!! I'm so sorry. I'm a horrible blog friend. I'm going to keep reading before I say anything else because I have lots of catching up to do on your life! :)
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