Thursday, February 18, 2010

back in the hospital....

So here we are back in the hospital....again....
Last night Emily started with her Infantile spasms jerking, after 5 minutes we are to give a klonopin. It did not stop we are to repeat the dose after 5 more minutes. I believe we actually gave it about 16 minutes in. 20 minutes in she stopped but then started this shaking/tremors.
I called the on-call neuro and they said to bring her in.
It was almost an hour by the time we got here and she had finally quit. I know she had a real seizure this time because after she was done she cried inconsolably.
She had a couple small ones but it seemed to be over with. A little while later they admitted us and all seemed ok then she started again.
This time she did her infantile spasms jerking for almost 50 minutes. Mind you she had her 8pm meds (dilantin and keppra) and she also had 2 doses of klonopin right before we came in.
The doctors gave her a dose of IV ativan, still not stopping, so they gave her another dose. She didn't even go to sleep! That was double the amount that should have knocked her out. She continues seizing and we had exhausted most IV seizure meds except one and the Dr. was getting ready to give it and she finally stopped. PTL!!!
She is currently asleep as I cautiously type.
We got the ok to start vigabitrin(sabril) but it has to come from a speciality pharmacy and it could take a couple days to get it. I pray we can get it soon because she is not responding to anything!
Also the neuro called me today and told me he faxed her eeg to the Cleavland clinic and they think during her video eeg she had one very long seizure. It was a 30 minute one but the said she did not appear to have any others.
I just want answers and it is so hard just setting her and not knowing.
Also tonight in the ER the dr down there had not clue about Emily's diagnosis. I had to tell him everything about it. He asked if I was a nurse and I told him this is my job I have to know all about it.
Please pray for all of us today. Joe just got to sleep after being up for 24hour and I have yet to sleep. I am not so worried about that as I am for my baby.
We need answers and a treatment that works............... Desperately. I love her so much and I just can't stand this anymore. I hurt for her. I long for her to wake up and not have a seizure.
I will update tomorrow after I talk to the neuro.


  1. That had to be such a hard night for you all to feel so helpless for Emily... praying the docs have more answers today... & praying the new meds get there soon & it will help control these seizures...

    Rest friend... give me a update whenever you all can... let me know if you need anything!!!

  2. Praying that everything comes together quickly.

  3. I know that as Christians you are keenly aware a kind and loving Heavenly Father has heard my prayer lifting your family up. I pray that the answer that
    He knows, about how to cure Emily, is revealed to the Doctors quickly. I have prayed a hedge of protection around you to protect you from the enemy's attack and believe wholeheartedly that help is all around you all. God Bless You All.

    Dave Whitener

  4. Came to visit through Rebecca's blog. Praying for you and your sweet family.

    I pray you all get rest too.