So we left and went home on Janurary 11, 2011. I was so excited yet scared to death. It took a few days, but we adjusted wonderfully! She had a few appiontments in the last 2 weeks, all showing her heart as doing wonderful. We were having a slight problem with eating, but with persistance and we know we could over come it.
My 4 year old Emily came down with a cough, to her it is not a big deal, in a 6 week old with a low immune system and half a heart this is a huge deal. Grace started to develop a cough on Monday the 24th after we were just at the heart doctor. By tuesday we were starting to worry. By wednesday morning I took her to the doctor. The doctor sent us to Flager hospital for a rsv test. The results came back that afternoon negitive. Thursday morning the cough became even worse. I drove her up to Wolsons Children Hospital Thursday, they rushed her into the emergency room once they checked her stats, they then brought her up to the ICU. Today it is Firday night and we are still in the ICU but grace looks great. We are hoping if her stats stay the same we will move to the 6th floor tomorrow with a hopefully discharge sunday or monday.
What a reality check. She can go from so strong one day to the ICu the next. Her heart is very fragial even though it is doing well. Until all 3 surgeries are completed we need to be on toes and relize that things can change at any moment.
Cerish every moment things can change in a second!
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