I have learned so much in the past couple of months. I know I need to be so much more proactive with Jon's care than I have been. Fortunately a very informed anesthesiologist was not shy about stopping Jon's first scheduled surgery. It is not that I wasn't aware of the possible risks and complications of anesthesiology, I was just overwhelmed with it all. So with that learning experience behind me, and a list of risky and appropriate anesthetic agents I printed out from someone on this community site, we are moving forward with a new surgery date. Jonathan has 3 kidney stones that need to be dealt with, the first by surgery and the other two hopefully by shockwave lithotrypsy. The first procedure is scheduled for Tuesday, March 31st @ 10:30 am and then we go from there.

Have a blessed day.

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Comment by jenn on March 19, 2009 at 7:34am
good for you, waiting until you feel right about it is important, we switched ffrom a local hospital to a shriners hospital a few hours away when austin needed surgery on his foot. the local hospital was not clear on what they could use for anesthesia, and was not familiar with duchennes! i dont want to educate anyone in that situation, they actually told me they were not confortabel doing it... a funny story, a few days later my step-sister had knee surgery at the same local hospital, and they told my step dad in the recovery room " we know there is a family history for duchennes so we looked up and followed all the precautions" we all laughed about it, she is not blood related and shes not a boy, and doesnt have duchennes... it is important to know everything, but also to find a hospital that does too. good luck, let us know how it turns out.

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