A deep breath ...

We spent 6 hours in Cooks Children's hospital. Emily was weighed and had her blood pressure taken then taken through to a cubicle in the far back of the ER. A very abrupt nurse made small talk for a moment or two then hurried way. A doctor saw us after about an hour and talked about her lack of knowledge where RSD was concerned and that she didn't really know what she could do. Both anesthesia and Neurology were paged. The anesthesiologist that had asked us to come to the ER decided that this wasn't his problem and therefore he was "unable to offer help at this time" and Neurology scratched their head and said "up the gabapentin 100 mg per day". Despite Emily's uncontrolled chronic pain our discharge papers were given and Emily was lifted back into her wheelchair ready to leave. The abrupt nurse now sat at the nurses station outside our room. She was totally unfriendly and clearly not suited for a job in a children's hospital. She never said a word when Emily said thank you as we were leaving ...

The drive home was tough, Emily struggled to keep it together and when I lifted her into bed she broke down. The fact that they refused to help wasn't lost on my 11 year old. The fact that because they don't know what they're dealing with intimidates them into behaving badly also isn't lost. Emily can see them treat me like I'm making all of this up despite the physical attributes that Emily has and the chronic pain that she's in and it makes her feel horrible. I am aware that pediatric RSD is rare and that maybe 10 cases per year float into Cooks Children's hospital. 10 kids, that's 10 children treated like they don't matter. 10 parents who are put down by ignorant doctors and snooty nurses. 10 ...

As a medical professional you would think that even if 1 rare case came through the hospital that they would do what they can to LEARN about the condition. A simple call to Harvard or another pediatric RSD specialist would result in knowledge that could be used to help these kids. Hellooooo!!! Common sense!!!

It took until about 9:20 am to settle Emily down because being sent away from a children's hospital after we asked for help was extremely upsetting. Many people have asked me this week how I feel and what's my plan. My answer is simple, I'm just going to take a deep breath and start each new day with a fresh attitude and I so very proud to say that Emily does the same everyday as best as she can. As long as I have breath left in my body RSD will not take my child. Emily has RSD, RSD does not have Emily ...