Meeting with Childrens Hospital Management

Fate has an interesting way of throwing you a bone you don't know if you really want or not.

We were at sushi joint a month back and happened to start chit chatting with the folks at the table next to us. Despite the sake, our proffessional affiliations came up and it turns out they were a board member and a director of one of the Childrens Hospital of Pittsburgh  fund, respectively. Without getting into details we mentioned we take our daughter to the Cleveland Childrens. Business cards were exchanged.

We ended up being contacted by an upper level administrator who handles complaints, which are obliged to be reported according to a state department of health protocol. As those of you who know us personally may remember, we had a few bad experiences with Sophie's two surgeries there. We decided to let things go at the time, as we were so focused on getting her good care, and afraid to complain in case we needed to end up take her back there. With a multi-year treatment plan, and so many surgeries, I didn't want the one wielding the scalpel to ever pause in the OR and think, 'ah, it's THAT family'....

So I find myself in the offices of CHP. The email conversations had been cordial and low key, I thought we were exploring ways that Eric and I could get involved with a parental advisory committee. My job doesn't require power suits, but I wish I would have dressed to impress that day. Something about the exchange made me feel like such a kid, instead of a woman advocating for her family. The response I got to our story was very interesting, she seemed nervous. Kept going back to one really disturbing incident that may need to be turned into a formal complaint with formal action. She has to talk to the head uppity up and get back to me. Suddenly I wonder if I need counsel?

Ugh! We will see what happens. I guess I am so focused on getting this all behind us and forgetting it. I don't want anything but smooth treatment for Sophie. Part of me feels that if we keep our intentions and hearts pure, she will heal faster, avoid complications and dodge any rogue cancer cells at puberty and for the rest of her life. But the fact is: breakdown in hospital procedure and protocol is a problem that needs the whistle blown on it and has nothing to do with my superstitious nature.I am always trying to gloss over hardships and blow it off, so that 'everything is ok'. But having a child with special needs is forcing me to be able to be vocal about things are not ok, or normal.. Guess we'll have to see what happens next.