March 19 2010
Spring is finally here and we have been enjoying it ! :0)
A few days ago I put Eliana for the first time in a swing.....she LOVED it ! She knew how to propel herself. It was like she had always known how to do this.
Tears streamed down my face. The people and tired parents around me must have thought I was half crazy. But you see , this image has helped me to get through last year.
I had "seen" Eliana when she was still inside . I had seen her on a swing with rapture on her face . She had light reddish brown hair , thin and curly. A round face . She was oh so sweet , very wise, independent. and very very tiny .All true . When we thought we were going to loose her I always thought it couldn't be ; she first had to swing !
April 29 she will have her first lung profusion scan in Philadelphia at CHOP. Something we don't look forward to. She will need an IV , she is so much more aware.....
We hope there won't be any scar tissue.
I don't think there will be , since I got a sense in CA that there won't be anymore crisis.
Today though we read our first(east Coast) hospitals last consult paper. It said they foresee stenting. That's not fun to hear....but who do we trust ? Doc Hanley doesn't believe in stenting and he fixed her !!
Also; Michael Ruhlman e-mailed me back !! For me a Huge happening. He wrote the book "Walk on Water" Inside an Elite Pediatric Surgical Unit. www.ruhlman.com He has the same thoughts I do,,,,
This is what he wrote;
I don't know what can be done. it's a horrible situation. everyone who finds themselves in this predicament needs to read the chapter in my book. ( the Good , the Bad and the Good Enough ) call the docs on the error, complain to the hospital. find the medical reporter at your main newspaper.
only real solution is to have 5 big regional centers that only do CHD repair. but it makes so much money, all children's hospitals want to offer it.
I will sign of for now. Eliana still doesn't sleep through the night and I am tired . It's not too bad though . I feed her and she goes right back to sleep . I am amazed how I can function. In the past I would have been a wrack :0)
PS; One weird thing happened last Monday after a funeral I played. I had let the thought of suing go and put it out of my hands into the ones from above.......
Well; I ended up going to the lunch afterwards.....sitting next to a man who happened to be a big time DC lawyer who told me the name of his very good friend who is the "best malpractice lawyer in the country " living 20 minutes South of Frederick....... I am NOT a person to sue.... I guess I will call this particular lawyer , hear his view and THEN let it go !!!!! :0) The only thing what I keep thinking is ; if nobody stands up , nothing will ever happen.
