Wednesday, May 12, 2010

bad to worse

I am blogging this because it is too hard to tell 35 people the same thing over and over. Please do not get your feelings hurt because we did not call you and tell you personally. We are choosing not to call anyone right now. It is too hard to say what we are going to say. If you would like, you may call us later tonight and ask questions but right now this is how we are choosing to update about Emily.

Last night she had a really bad night. Really bad seizures that would not respond to ANY meds and they were very strong. They were getting ready to send her to the PICU-(pediatric intensive care unit) when she finally stopped.
So that was our night-BAD


This morning the neurologist-neurosurgeon/epiologist came in to give us the results of her PET scan. Emily's seizures are from everywhere in her brain. She is not a surgery candidate. He also said from monitoring her on a constant eeg the past few days she has a very severe form of epilepsy. We already knew that but we had hoped that the PET scan would show that she was a surgery candidate so that was a huge blow.

She does not respond to most meds so we are adding some meds to her already extensive list. Once she is on the new drugs well we will begin to wean her off her klonopin and then use klonopin as an emergency drug instead of ativan and diastat because neither of those are working for her.

Our new plan, since she does typically respond well to steroids (for a short time) is when she starts a big cluster of seizures we will begin a round of 3 days or so of oral steroids-starting now because as I am typing she is seizing.
We are also starting a new drug zonagran (tonight), there are only 3 drugs left he thinks could work for Emily and this is the first one we are choosing to try. We will also be increasing her phenobarb because her phenobarb level is still a little low and in higher doses she does respond for a little while.
We will also be meeting with the keto dietitian to see if there is any tweaking we can do with the diet because she is still not in large ketones. That meeting is tomorrow.
Our new goal with Emily is less seizures, seizure freedom is not realistic right now.-WORSE

The doctors here are amazing and incredible. Sadly there is just not much else to do for Emily. Only time will tell what the future holds.
This is the hardest thing to deal with because there has always been a next step, many other drug choices and tests. Now we are down to 3 drugs and that is it. We have hit a brick wall and it hurts.

So please be understanding that right now we are grieving again. It may sound horrible to say that but we are. We are grieving the hope that we had in new meds, new doctors, new tests, new outcomes for Emily.
The reason we chose not to call anyone is because this is hard enough to type let alone tell so many people. Emily does have a lot of people who love her. Again, it is not personal. It is actually selfish and right now that is what Joe and I need to worry about, ourselves and Emily.

We will be coming home on Friday probably. She is not stable for travel right now, so hopefully we will be home this weekend. We love you all so much and are so thankful for all the support we get. Please keep our family in your prayers. This is just more difficult then I thought it would be.
I love Emily so much and to see her suffer like this is beyond fathomable.

13 comments:

  1. Its not selfish at all Erica... it IS doing what you & Joe need to do right now... & grieving is a part of it. We're ALL grieving with you, with Joe & with that beautiful Emily... And while it may feel like you're hitting that brick wall & running out of hope in meds, doctors & answers - we still have hope in our Savior who is Mighty! I know you all know that...

    Sending you hugs, lifting up prayers for a safe travel home... let me know if there is anything you all need. Love you all!!!

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  2. I so agree with the fact that you two are not being selfish.... you are doing what Joe and you need to do at this moment, to work thru all the news that you have just been given.

    I will be saying prayers for Emily, Joe and you to give you the strength to handle all that you have been given.

    If there is anything you all need please let me know.....I know I am not close, but I can certainly do whatever you may need me to do from afar.

    Thinking of you,
    Christy

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  3. It is wise and healthy to grieve right now. And know that we are all hurting for and with you.

    Just remember that things are always harder and scarier in the hospital. And Emily is the same Emily as she was before you learned this. That's what we always remind ourselves when something hard happens with Collin.

    We are lifting the three of you up to the Father.

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  4. Dear Erica & Joe, We are so sorry about Emily and understand that you need your time to grieve. We love you all . Your in our prayers. Kay & Phil

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  5. You guys are in my thoughts and prayers. I know that God has each of you wrapped in his arms.

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  6. I love you all. Praying for you. You aren't being selfish. You are being, as usual, right where Emily needs you, focusing your energy on her and each other. I am so sorry the news wasn't better, Erica.

    Lisa French

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  7. I hope the ketogenic diet will work so you can get rid of the meds. May Jesus protect your family and give you the peace you need to continue each day from those awful seizures. I hate seizures and every time my daughter had it,literally it broke my heart. Please know you are in my thoughts.
    In Christ,
    Nicole from Rosemead, CA

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  8. Erica and Joe... selfish?? No... that you aren't... not now... not ever. You are doing exactly the right thing, and anyone who says differently... well, then perhaps they are being the selfish ones!

    I can't possibly say that I know what you are feeling, because I don't... but I can tell you that God knows, and while you are grieving, he is as well.

    Praying that you can get the little princess stabilized and that you can get home soon. You know that we are here if you need us!!

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  9. You and Joe are doing exactly what you are needing to do. I still have my faith in God and I will continue to pray and put my faith in God. I have had 2 family members who God miraculously cured after the Drs saying there was no more hope. Baby Emily will be the third one-the third one is a charm!
    I have my arms around all 3 of my children constantly.
    My heart is with you all.
    Grandma Mary (and Jeff)

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  10. MOTHER------MAWMAWMay 12, 2010 at 6:17 PM

    I LOVE YOU ALL SO VERY MUCH AND I KNOW THINGS HAVEN'T WORKED OUT LIKE WE ALL WANTED THEM TO. BUT WHEN YOU LOOK INTO EMILY'S EYES YOU KNOW SHE IS YOURS FOR A REASON.WE MAYNOT KNOW WHY BUT,FOR NOW JUST GIVE AND RECEIVE ALL THE LOVE YOU HAVE FOR THE ONE YOU HAVE IN YOUR ARMS.

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  11. Erica I have waited to comment on you and your childs sickness,for a long time,because I love you and have for so long,it hurts to see you suffer such pain. New cures are found every day,never give up your faith and hope in a better tomorrow. GOD is with this very special child and will help you, don't get impatient,let him work in his own time,and in his own way!!You are Blessed with this child for a reason and will be given the strength to get through the worst of times, never feel that you are selfish, greaving is a personal emotion,eveyone is greaving along with you,explainations are not necessary. We also hope and pray with you, for your wonderful baby!!! I PRAY for nothing but the best for EMILY, YOU, AND JOE!!! Take care of yourselves you need your strength more now than ever before!!! Please drive careful coming home. YOU ARE IN TRESA'S AND MY PRAYERS,AND HEARTS ALWAYS!!! All the love we can give!!!!!!

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  12. Joe and Erica you all don't worrie about no one or anything just do what you're doing for Emily! She comes first! You all are still in our prayers and the doctors are not GOD! Aunt Loretta loves ya Emily and wanted to go up there to be with you! But it didn't work out. I love all of ya and miss you all so much and if there's anything you need just call Terry and I and we will be there no matter what! If I could make an exchange from God she would be well and I would take on her pain and suffering! God knows I sure would! I'm praying so hard! Love ya all Sis

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  13. You guys don't know me, but God knows all of us, and even has the hairs of our heads numbered. We are praying for you guys in Kentucky and Virginia, that God will wrap you in His arms of love, and continue to lead you. We have grown to love all three of you through Mary. Know that many people have you in their thoughts and prayers.

    Margaret Shepherd

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