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!
at 9:39 PM