Monday, August 29, 2011

We are still inpatient, things have gotten much worse :(


Emily was weaned off the pain pump, only to have unexplainable pain episodes all day. We have run every scan and test imaginable, and no one can find anything. She screams and writhes around and bites herself (or me). She tears out her hair, bangs her head, and screeches. It is horrible. It comes on suddenly - she will be fine for a minute or two, and then go abruptly into this. It can last anywhere from a few minutes to a full hour. There's no more than 30 minutes break in between episodes.

She is back on the pain pump, at more than twice the dose she was on before, and still having these episodes. She is also on ativan and seroquel around the clock, with no relief.

The doctors all agree that this must be a progression of her underlying mitochondrial disorder, which is not specifically diagnosed. They were blunt today, they said that they do not feel they will be able to find a reason for her pain. Their goal is to get her comfortable enough to go home.

Please pray for Emily. Pray for us. Pray for her 11 year old brother, who doesn't understand why the doctors aren't fixing his baby sister. Pray for the doctors to find a way to make her comfortable. Pray for a miracle!

And I hate to add this in to this post, but we are getting very behind financially because of being inpatient over 90 days this year. The drive to the hospital is 50 miles each way, and my husband and I try and switch off every couple days for sanity breaks. The cost of gas and the cost of eating every meal in the cafeteria are adding up. Alex's car costs $11 a day to park at the hospital, luckily mine only costs $4 with the handicap placard. It all adds up, and Alex is taking days off every week. Someone has to be home with Jacob, and someone has to be with Emily. It's getting pretty desperate. If you are in a position to help, please donate to our ChipIn fund. It will go directly to us. I hate to even ask or put this here, but we really need help!

13 comments:

Alison said...

I'm so sorry to hear how sick your little peanut is - you will all be in my thoughts and prayers.

Our Family said...

i am so sorry! i wish i could help financially! but your sweet girl will be in my thoughts as she has been.

The VW's said...

I hate that there isn't an easy fix for your sweet girl! This must be so draining on you!

I can't believe that your hospital charges you to park when your child is in the hospital!!! That is RIDICULOUS!!!

I'll be thinking of you and praying!!! Big Hugs!!

Buttercup said...

My heart and prayers are with you. Will be over to the chip-in link this week.

Junior said...

so very sorry to hear this. we are praying for some answers for your sweet girl. Hugs

Elizabeth said...

I am so sorry. The suffering of your family is awful. I will continue to pray for healing, for Emily to be comfortable and at ease and for you and your husband and son to find continued strength and courage.

Becca said...

Oh, this hurts my heart to read. I'm so sorry for you and your beautiful baby girl, hoping for answers soon for all of you. I can't imagine how helpless you must feel. Stay strong. (((hugs)))

Lacey said...

I agree with Alicia, thats one thing I'll have to get used to, paying for parking when your child is sick. Ridiculous!
I just really want to get down there, I hate being so far away. Have you done any research online to see if you can find a great doctor somewhere or similar symptoms?
Just a few more weeks and I'll be there!

Trine said...

I've "chipped in"... it's no fortune I'm afraid but it's all I can afford today. I hope things begin to look up for you xxx (the address I used to chip in is not one we ever use anymore - but you'll find me at http://alittlelessalone.blogspot.com xxx)

Eden said...

Oh Sara, I am so sorry to hear this. I had hoped you were not updating because you were busy AT HOME with her, but feared that that was not the case. Hugs to everyone. I can't believe they are making you continue to pay for parking when you are inpatient with a child, that is totally ridiculous. Do you need the car while you are there? If once Alex would drive you down, drop you off and drive home you wouldn't have the parking expense. Then when you trade you just take the other's car. It does strand you at the hospital but it doesn't sound like you are going far from her side anyway. Hugs to you ALL.

Lady said...

It's ridiculous that you are made to pay for parking, and at such extreme rates. There is a $2 flat day fee at the University Hospital here, if you get your ticket notarized (at any security desk) and then other options for longterm stays.

$11 a day is sickening. Absolutely sickening. I am so sorry to hear that.

I wish there were answers. I really do. It really hurts to not KNOW what to do, or how to at least HELP. Praying for comfort and peace for that sweet doll.

Praying for peace of mind for your family.

Jamie said...

Oh Sweet Girl....:( Can the Hospital AT LEAST give you a meal card or a parking pass or sorts? oiy. I would inquire and push hard for that. Lots of Prayers for Sweet Emily.

caregiver91 said...

My thoughts and prayers go out for you, Emily, your son, and the rest of your family. My hope and prayer is that they will be able to give sweet Emily a break from all of this horrible pain. I wish I could help financially but I am experiencing financial issues at the moment due to medical problems as well. I will offer many prayers for your sweet girl.