Listen Up: Hear Her Words Not Her Chart

Navigating today's healthcare system is challenging for anybody, add to that the Mother overprotective of her darling princess and you have one hot momma on your hands. I wonder though, how without inside knowledge of the system, I would complete the tasks at hand. I know not many pediatrician would act as mine has in such a proactive fashion. We have a problem with healthcare in the US and children like Miss Gillianne are being affected. It pains me to think of the ones that aren't as proactive as I am in my child's healthcare and it's not the parents fault, it's the system.

So why is this my daily rant? Gillianne was denied an appointment with nephrology. The powers that be looked at lab work drawn last December and concluded RTA is not her diagnosis. Now some may remember the first Biochemical Geneticist that told me to "switch diapers" that he was "unimpressed with her lab findings" and they oh so choice words of "Mom must be a nurse, they always complain about stinky urine". Needless to say he is not the specialist we see know for her metabolic issues. In addition to nephrology denying consult so has Immunology. Now this is less concerning to me but none the less, they ask for 30 pages of documentation and then respond with "Her levels are okay for now, call us back if the decrease more". Okay, so 9 isn't low enough, I guess we call at what? 0? Okay then.

Well after much discussion and back and forth phone calls, faxing lab values between hospitals, nephrology does want to see her. Now we sit back and wait for them to call so we can schedule our appt which likely will be in about 3 months.

I think medical school is on the horizon for me, then I won't be dependent on all these self absorbed, egomaniacs.