Isn’t that always the way…

Mariella’s pulmo appt was cancelled for tomorrow…to be rescheduled for next month. I was really looking forward to this appointment. I’m really not one to beg for tests, but I was going to ask for a chest X-Ray. I know, I sound crazy…because she doesn’t really SHOW any indication for needing a chest X-Ray…BUT (there’s always a BUT, isn’t there) we has a instance about 2 years ago, where she sounded mostly clear, with a minor “squeak” in her lower lung. Her sats were at 100%, she wasn’t coughing AT ALL…we were just there for a routine appointment. Dr. Duda sent her down for a set of chest films (she was due for them anyway) and both her lungs were occluded from top to bottom with thick mucous. It looked as if a sheet of white paper had been placed behind the films.

So, basically…she can be in serious TROUBLE without seemingly being in distress. (Her doctor doesn’t even hold much to her O2 sats, since she’s had blue lips and fingertips, and still had O2 sats of 98% or 100%.)

With her being so “off” (not just behavior, she LOOKS off) I was really looking forward to getting her in. I hope that whatever is going to happen happens BEFORE we leave for the cruise. (or that she turns a corner, and starts looking and acting better) I will NOT have fun, or relax on the cruise if I’m worried about her. Thankfully, I fully trust my mom and dad…I’ll just write up distinct instructions on how to treat a flare, and when to call the doctor or go to the ER (which I struggle with, so how am I going to articulate it to them) I just wanted the reassurance that everything was OK (or a treatment plan, if they weren’t) Going to the regular pediatrician is useless…(and they admit that, with Mariella) They really don’t know what to do with her.

I’m feeling overwhelmed right now…and I probably shouldn’t be, but I am.

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