Today Emily's RSD is galloping ahead but we don't let it beat us. I have developed just the right blend of compassion mixed with forceful positivity that gets Emily going in the morning. Structure and discpline have remained in place together with NO! drugs of any kind. It's been 18 months since I took her off vicodin and lyrica and the miriad of other medication that anyone and everyone threw at us. No more! It's all great giving RSD kids medication but have they really researched the long term effects?? Nope! The medication doesn't really work anyway it just sends your child into an unrelenting fog. That's not something I ever wanted for my child and I simply wont have it. Her pain level I hear you ask?? Emily is still in chronic pain. her RSD is now in her feet and legs, hands and arms and new "feelings" develop often. Recently a new patch on numbness arrived on Laura her "good" leg, I show no fear as I'm careful not to cause alarm.
Emily's pain level is around a 9 out of 10 which is obviously very high, Her stamina is low but she's high functioning. School has been disasterous but I've found her a way to graduate to high school this next year and i'm ever hopeful that each year will be better.
My daughter is an amazing young woman, an inspiration to everyone she meets. You would never know that she lives with this chronic disease because her face is rarely without a smile that lights up the world. I couldn't be prouder of her :)
We take the on 2 off 1 approach. 2 days filled with activity then 1 day to recover, it's been this way for quite sometime. I made a point of making her responsible for her own disease, I backed way off. I have to make her ready for adult life so wrapping her up in a fleece blanket for the rest of her life just isnt practical (although I often want to do it). We've come a long way.
I don't know or care what the future holds because only today counts, I can't control RSD so it will do as it pleases without our focus. We live purely for today.
Friday, July 31, 2009
What happened?
I have been bound by my attorney up to this point but it's time to set the record straight. I am unable to sue the doctor that injured my child because she falls under the protection of a Dallas teaching hospital but that will no longer stop me from telling Emily's story.
In November 2006 Emily was wheeled down to surgery, 6 hours later her life changed forever. Apparently Emily's surgeon placed her in a frog legged position and bound her to the bed. The straps binding her were to tight and cut off circulation to her lower limbs from the knees down resulting in severe nerve damage and RSD. I suspect the surgeon stood to the left and leaned across my daughter because the left side was way worse. Torture followed ...
The surgical team closed ranks and "lost" the surgical notes. Efforts by 2 wonderful attorneys to seek justice was useless because trying to find a doctor to testify was impossible and in January of this year I was forced to drop the case. My medical bills grow and the surgeon sleeps soundly in her bed.
The day of Emily's injury rarely leaves my head even today. In my gut I felt that the surgery should have been stopped but I didn't stop it and I live with that guilt. What if ...
Children's Medical center in Dallas treated Emily horrendously and I would strongly advise NOT taking a child there. My anger has never gone, writing this post brings back the feeling of desperation and sadness, I guess it's never far away.
Am I still positive? You bet!! Scratch the surface and you'll find a stew of feelings and none of them good but they stay in a padlocked box in my head. One day when Emily is older and we've found a comfortable pace i'll empty the box on the floor of my mind and put it all to rest, I'm not ready yet ...
In November 2006 Emily was wheeled down to surgery, 6 hours later her life changed forever. Apparently Emily's surgeon placed her in a frog legged position and bound her to the bed. The straps binding her were to tight and cut off circulation to her lower limbs from the knees down resulting in severe nerve damage and RSD. I suspect the surgeon stood to the left and leaned across my daughter because the left side was way worse. Torture followed ...
The surgical team closed ranks and "lost" the surgical notes. Efforts by 2 wonderful attorneys to seek justice was useless because trying to find a doctor to testify was impossible and in January of this year I was forced to drop the case. My medical bills grow and the surgeon sleeps soundly in her bed.
The day of Emily's injury rarely leaves my head even today. In my gut I felt that the surgery should have been stopped but I didn't stop it and I live with that guilt. What if ...
Children's Medical center in Dallas treated Emily horrendously and I would strongly advise NOT taking a child there. My anger has never gone, writing this post brings back the feeling of desperation and sadness, I guess it's never far away.
Am I still positive? You bet!! Scratch the surface and you'll find a stew of feelings and none of them good but they stay in a padlocked box in my head. One day when Emily is older and we've found a comfortable pace i'll empty the box on the floor of my mind and put it all to rest, I'm not ready yet ...
Time to begin again ...
I recieved several emails recently from people who read my blog. I've been told that in some small way I inspire people and they want me to carry on writing. Ok people, get ready because here comes the update LOL
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