This will be quick because I am updating on my phone. I had to give Emily diastat and call 911 again on Friday morning. We were taken by ambulance back to the closest hospital and than transferred to children's hospital. We are stopping banzel and starting a new seizure med called mysoline.
The dr's here called UCLA and they won't fit us in any sooner. So our goal is just to try and keep Emily stable for 2 weeks until our appt date.
I'll update when I am home, hopefully we'll be discharged again today.
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.
20 comments:
so sorry to hear that you guys are back in the hospital. Big hugs, and hope you can get home today.
that is awful that they won't fit you in sooner! can't they do an ER transfer?
ps. my word verification is damet. i thought that was appropriate. haha
I am sorry! I will be praying for Emily!!
Erica
Oh, stinky :( I hope they figure this out soon!
And ps. my word verification is "hatin". What's up with these randomly appropriate words? ;)
I'm so sorry. I will be praying for your girl!
i'm so sorry. how horrible! constantly in our prayers.
i can't believe they can't get you in soon. that is such a crock of crap. i'm so sorry.
You are in our prayers.
I hate that they wont let you in any sooner!!! Praying for stability until then!
Praying.
Praying for all of you!
So sorry to hear she is in hospital. Thinking of you.
I'm so sorry to hear that! I'm praying for Emily! Keep us posted. x
Darn it anyway ... so hoping they could get you in quicker.
Praying for Emily.Hoping you found home today.
OK....that's enough excitement for you guys for awhile!!! Hope you are home now and she is able to stay stable until the appointment! Love, Hugs and Prayers!!!
I am so sorry to hear this and just horrified, really, that access to UCLA is so difficult, especially when your little one is suffering so.
Banzel -- ugh. I hates that drug. I sure hope the mysoline helps -- isn't that a derivative of phenobarbitol?
uugh! Feel loved!
Goodness! She's keeping you on your toes lately. I hope things turn around soon. xo
I am just stopping by to see if you are home and have an update...I am so sorry that she is going through all of this. Prayers...
happy thoughts and lots of prayer are being sent your way, hugs to Emily! God Bless.
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