We were admitted Sunday, got home Monday night. Cal developed a lump on her tailbone. I knew it was not a bedsore since we are really careful to move her a lot. On goofy doctor asked "Did you drop her." Can I say, I wanted to drop him after such a goofy question. And, when we texted Cal's doctors, they were worried it might be the sign of some sort of infection. So we went to the hospital and kind of had to argue with the ER folks that we didn't want to put Cal under for an MRI since we were confident that the ortho consult had revealed a problem with x-ray and her ongoing problems with curvature of the spine. No matter how wonderful the doctors are, you have to remind them that Cal is not like other kids. An IV or putting her under or any other kind of intrusive procedure puts her all out of whack and when you go in for a GI issue or an ortho consult, next thing you know you are in-patient for a week getting all manner of tests. It's hard to explain to doctors who want to fix everything that Cal is not going to have ideal urine maintenance or eat as much food as the nutritionist wants her to. It's been five years since Cal was diagnosed, and when I meet new doctors unfamiliar with her case, I have to tell them that Cal will tell us what she wants and needs and we need to listen to her, not impose what we want. It always is a little hard to explain to young residents that we want her home and comfortable, that's what matters most to us. I had to explain to a very serious, earnest doctor just yesterday; "You guys have to understand you can't fix everything, we just want the best it can be," I felt like I was destroying her fantasy of what doctors are supposed to do.
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We always have to educate our doctors on our special kids. I Love CHOP but even they make mistakes ..my celiac daughter was given Goldfish crackers in recovery after her MRI 2 weeks ago . Even though she had a bright red allergy bracelet on for gluten allergy. It was a teaching moment for sure .
Prayers for you all! We get the same thing here at our local hospital. They've never even heard of it and have no idea how to handle a child like Jordyn. We've become very loud advocates and hope to educate them all the more we see them. I totally understand where you're coming from and hope you get/got some answers.