Friday, February 19, 2010

Going home today

We are hopefully gonna be going home soon. Just waiting on the final ok by the neurologist.
They changed Emily's meds around and it seems to be working a lot better.

The thing with any seizure disorder, you have to find the right combo of medication that works.
Every ones chemical make-up is different so some meds will work better for others and that is what we are learning.

They stopped her dilantin, valium/ativan and tripled her klonopin dose and we are going to begin weaning her keppra soon.

Also the vigabitrin/sabril is in the works, we should be getting it delivered at home today or tomorrow.
This combo of meds have really helped get her seizure activity under control.
Wednesday she had 13 including one that lasted over 50 minutes. Yesterday she had 7 with the longest being 24 minutes and today she has only had 2 with the longest being under 3 minutes.
She is sleeping a lot better too. We are beginning to think that may be one of her issues.
She has NEVER slept well. She normally would only sleep for 2-3 hours at a time, even through the night. I know sleep deprivation can increase seizures.
With the much higher klonopin dose comes increased sleepiness and she really has slept a whole lot more the past two days.

One thing that is different about Emily is that she looks like she is having classic infantile spasms but nothing shows on the eeg and she does not space out like normally happens when you're having a seizure. She sometimes smiles, laughs, kicks with excitement and will focus on things and people.
That is what has all the doctors confused.

There is one thing that is really bothering me. When we came to the ER none of the triage nurses knew what IS was , I can kinda get that because it is rare, but the ER resident didn't know much about it either. That really disturbs me. This is the hospital we will be coming to for any emergencies and I need them to understand my daughter. What options do I have to make sure they are informed? We get a survey to fill out and I will share all of this with them but what else can I do?
I know that she is not the only kid with IS that comes here, there is another kid here right now.
Don't get me wrong, I do like our hospital. Once we get up to the neurology unit I feel so much more comfortable. Most of them up here know Emily, even the IV nurses know her now.
I just want to make sure Emily gets the best care she can get.

I pray my next update is one where I say she has not had any seizures today.

I have faith to move mountains and I will continue to pray for strength to move this stupid, horrible, ugly seizure mountain.

Thank you all so much for the support and prayers!!!


  1. Erica, talk to your neuro about your concerns. Tell him you have to deal with er docs and nurses every time you come through the er that don't know about IS and maybe there is a neuro resident on call you can ask for. Don't just fill out the survey, call their guest relations dept and let them know of your concerns. Praying for you all!

    Lisa French

  2. I just heard about your story over on Rebecca's blog. Your story just breaks my heart. I am sending good thougts your way. Hang in there!

  3. Mary and Jeff JohnsonFebruary 20, 2010 at 8:37 AM

    This is so hard on my family, but we are a strong Christian family and we put our faith and trust in Our Lord. His Will be done and He knows our hearts. We will continue to pray and we know our faith in The Great Physician will heal our baby Emily.
    I do recommend that you get in touch with the guest relations dept and tell them of your concerns with the ER staff. Perhaps you can suggest they have educational seminars to teach staff about conditions that they do not know about. They can also distribute literature among staff about conditions they are unaware of. Bottom line is...when in the Emergency Room, Emily is in a state of Emergency and she needs to be treated by someone who knows her condition and knows how to help her.
    I will do whatever I can as well. I will get ahold of some people too.
    Love you guys,
    Grandma Mary and Grandpa Jeff

  4. Something that came to mind is having a packet you can take with you that your neuro could write up for you. Also, he needs to be aware that you aren't getting the immediate treatment you need when you get there and he and the hospital need to come up with something to do differently. You shouldn't have to educate the staff every single time you visit. There needs to be a protocol in place.

    On another note, I know that God has a plan for Emily and for you & Joe as her parents. I can't imagine how hard it is to remember that. I know that he loves each of you more than you can imagine. He feels your pain and shares in it. As crazy as it to comprehend he loves Emily more than you guys do (I have a hard time remembering this) and he wants the best for her. But it's his version of that and will only ever be in his timing.

    You three are in my thoughts and prayers.