Friday, May 28, 2010

out of ICU

Emily got moved to a regular floor yesterday (friday).
This is her "room" in ICU. One wall and a curtain.

We have never had to go there before and I can honestly say I don't ever want to go back. It was not bad for us, it was just heart breaking to see all of the other kids there.

Emily was there because she was given a lot of medicine to stop her seizures, so they needed to monitor her very closely and fortunately she did great!

Privacy is definitely something you don't get there so you hear and see a lot of things you don't want to.

To hear the cry of a mother who just lost her baby is a sound I don't think I will ever forget. I have never been so thankful for Emily. I don't have to give specifics but please pray for that young mother.

The nurses and doctors that work there are some very special people and I have a lot of respect for them.

Enough with sad things.....

So, good news is Emily did not have a seizure that we saw yesterday. She has been extremely drugged and now that I think of it I did not see any spasms either, I will have to ask Joe if he did. Actually it's been 27 hours since her last one but hey who's counting? :)

I had a great talk with Emily's neuro dream team :) and we have decided to add a new medicine, lamictal. That drug will slowly be increased to her max dose along with zonegran. Once she is on those we are going to wean her off phenobarb and we have already began to wean klonopin.
So while she has been here she has been getting iv steroids and oral valium, that combination seems to really work when she has a major cluster like she had. In the coarse of two days Emily had over 120 seizures, that we saw, and that is not including her spasms that she has almost every time she wakes up. On top of her g-tube balloon exploding again, it has been a rough couple days for her.
I want to thank everyone who called and left us messages or send us messages on facebook. I am sorry if we were unable to return all of the phone calls but know that we listened to them all. We were not allowed to have our phones turned on in the ICU. I am thankful for the people who support us!!!
So if Emily behaves tonight we just may get to go home in morning. Keep your fingers crossed! If not we will go home on Sunday.
Please keep in mind if you plan on visiting in the hospital or at home please make sure you are healthy. Emily has taken another round of steroids which can lower her immune system and we need to continue to keep her healthy. Seizures are enough for this girl!

One last thing, June 19th is the epilepsy walk and we still have not met our goal of raising $500. Every dollar helps!
Click here -> Epilepsy walk
If you would like to walk with our team just click join team, if not you can donate any amount you like. It looks like we are going to have a pretty good sized team!! I can't wait. I am going to try my best to get shirts made so if you are for sure walking and would like one send me an email or message on FB and let me know sizes.


  1. i hope you all get to go home soon!
    it's so weird how different every hospital is, the ICU's we've been in have the biggest and quietest rooms in the hospital!
    we are praying everyday for emily and you both.
    hugs from phoenix!!

  2. Thank God she is out of ICU! I hope you get to go home soon. Our hearts are always with you and our arms always around you. I love my children soo much!
    I think you get a t-shirt with a donation of $25 or more. Jeff and I both donated $25 and was asked what size tshirt we wear and what kind we wanted. White is for supporters and purple for people with seizures.
    Love yuns,
    Grandma Mary

    Grandma Mary