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MyStory

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We had Andrea home for 10 days before we realized she was ill. She had stopped eating and was very fussy through the whole night. We tried to wait until the doctor's office opened in the morning before taking her anywhere but when we felt her head and she was cold we knew we had to take her to the ER. Her temperture was only 90 degrees when we got her there. We were later told by the doctor if we had waited any longer she may not be with us. I saw them do things in that ER that I could never have imagined. It was all very traumatic for her and also for us. Her condition is called Cardiomyopathy and basically that is an enlarged heart. The left ventricle of her heart is not pumping blood out the way it should be. She was admitted into the hospital on November 7, 2007. She was on the ventilator for 11 days before coming off. They thought she was doing so well. Every ECHO that they did looked better each time. We really thought it may be possible for her to go home with us on medication for her condition. All of that changed on Thanksgiving day, 5 days after being extubated. Her breathing was not good and she was not comfortable. Every time we brought it to the doctor's attention he shrugged it off as if it were not a big deal and we had no choice but to believe him. Later that evening she took a turn for the worse. They did not feel she was getting enough oxygen from the nasal canula so they wanted to put her CPAP, that did not work and she wound up having to be reintubated. That was horrible. Since it was an emergency, Reggie and I were there and basically watched the whole thing. At 5:00 am the next morning she had a bad reaction when they tried to give her a blood transfusion and they knew there was no more they could do for her at that particular hospital, so they transferred her to UVa Children's Hospital. That morning Andrea had her first helicopter ride here to UVa and we have been here ever since. On December 6 she had surgery to receive a Berlin Heart. The Berlin Heart is an external pump that is attached into her own heart. It is doing the work that her own left ventricle could not perform. It seems to be doing what it is supposed to. It should help her to hold on until a heart becomes available for her.

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