Tuesday, August 6, 2013

how it all started - 2008

Written August 23, 2008 
This is a copy of the caringbridge update I wrote to inform family and friends about Hannah.

Here is how things started and the first few days at the hospital!
Wednesday, August 6th
Hannah had not been acting normal for almost two weeks. She was cutting her 1 year molars and really fussy. Her appitaite decreased and she did not want anything to eat or drink since Thrusday/Friday of last week (Aug. 3rd-4th) Then we noticed that when she set up she would scream, not like in pain, just like she was uncomfortable and wanted me to hold her. Then the following day she would not stand or set up. She would not put any weight on her legs, they were like a wet noodle! Something was not right. I called and got her in to see the nurse practitioner, since this was the earliest appointment available. She said she had ear infections and a was a little dehydrated. She knew her legs was not most likely from that.....but wanted to just watch them to see if they would improve. That evening she did not get any better, I would say a lot worse. 
I could not get her to eat or drink or to do anything like my normal Hannah would. I seen her doctor on Tuesday morning and she was shocked about her legs, worried to say the least and said we needed to go to Arkansas Children's Hospital in Little Rock.
After a long 3 hours in a 1970 style ambulance Hannah and I made it on the stretcher to the ER at Children's in one piece. Riding backwards for three hours was very miserable!
We got to the ER, talked to a few doctors, they did a straight cath on Hannah to do a urine test, had to draw blood, she had to get and IV (the first one blew, so she had to be stuck twice), then off we went for a full vertebra MRI. Hannah had to be sedated and it took about an hour. It was so hard feeling so helpless. We finally got the results of the MRI. You know when at least three to four doctors, more white coats and a handful of nurses come into the room something is not right.
She has a 6 cm tumor (about the size of a baseball) that is shaped like a barbell, exstending from the soft tissue around her kidney pushing into/around her vertebra and growing on the back side of her vertebra
We were told she would have surgery first thing in the am, they put her in front of all the other surgeries, then we would go from there. She was admitted to the PICU for the evening.
She went to surgery first thing in the morning. 
A surgery that we were told would take at least 6 hours only took two and half maybe three hours. The tumor was not in the vertebra fluid just around it and/or around four of the nerves. The doctor took the tumor out around the vertebra and she instantly started moving her legs. PRAISE GOD! The part of the tumor by her kidney will have to wait for another day, since it will have to be retrieved from a different location.
Now she is recovering fine. They are keeping her very well medicated because she needs to lay on her belly for at least 24-48 hours. The tumor is getting tested and we will find out most likely on Friday if it is malignant or benign. If it is malignant it can spread, she will need chemo and surgery. If it is benign she will need another BIG surgery!
Jon and I are holding up fine. Hannah is staying STRONG and Jackson is hanging out with his Papa Boles and Nena.
Thank you for all your prayers. I will keep you posted as much as I can. Hopefully we will be out of the PICU by tomorrow.

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