Froggy started showing signs of malabsorption on Tuesday, and I didn't hear back from the Pulmonologist until this morning. She's been very uncomfortable, gassy, having excessive bowel movements and all of the wonderful side-affects of the food not absorbing properly. The clinic line would revert me back to the operator, I emailed our nurse, called her voicemail. Finally yesterday I called the on-call Pulmonologist who said he couldn't access my doctor's files and we'd have to wait until today. And now it's Friday and I have to deal with the insurance company and CCS before they close for the weekend. Ugh.
Our doc said that Froggy needs to go back on a stronger acid-blocker first, before they increase her pancreatic enzymes. The name brand acid blocker is not covered by our insurance and is $200 bucks a month. Which is why we switched to the generic, that now isn't working very well.
But my doc informed me that CA Children's Services should be paying for it -because they pay for all of her other patients. She can't understand why they are denying our claim. Well neither do I!
I have dealt with our CCS nurse case manager for months and she said that the acid blocker is not a direct treatment for CF. Which is crap. And that's what my doc said when I told her. The problem is that the CCS nurse case manager knows nothing about CF. I'm beginning to question if she really is a nurse at all, or perhaps just dressing like one for Halloween. I have come very close to calling her the queen mother of all swear words for women. You know the one.
So for now, I've called our CF nurse who also acts as a social worker at times, to help me deal with CCS. Let's hope things go our way. The energy it takes making these calls, dealing with insurance companies and pharmacies, social workers, docs, and everyone else who won't give me a call back, is exhausting. And Froggy is not sleeping well, so mommy is not sleeping well.
Froggy's vitamin levels came back okay, her iron is down, even though her hemoglobin was perfect. Not sure I understand that. And her zinc levels were low, so she'll have to take yet another stinky vitamin. What really concerns me about all of this is the fact that I was the one who brought up checking her vitamin levels at our last appointment, not the doctor. And it had been a long time since they had been checked. Along with the staff not returning my calls, I'm about ready to move to Minneapolis (where the center was rated the best in the nation). Maybe they'll give me a call back.
Sorry for the rant. It's either that, or I really will call the nurse case manager the queen mother of all swear words. The good news, and that is what I need to concentrate on, is Froggy is very healthy, her vitamin levels were good, her culture was negative and Froggydaddy is back from Vegas. We missed him!!!