Archive for the 'pulmo appointment' Category


I got a call last night. Mariella’s Pulmo has to push off her appointment AGAIN…this is the second time. The reason THIS time is that there won’t be any RT’s in the office to do PFT’s. I get that they are important, but she has been mini-flaring almost constantly for about 2 months.

I was able to call the office on a 5 minute break I had today…and she was able to squeeze us in on Friday afternoon. I don’t love afternoon appointments, but it’s what we can get. Thankfully, Rob can bring Abby to work with him for a little while.
On another note of aggravation, Rob brought Abby’s script for her new ADHD meds to the pharmacy…and for some reason, insurance doesn’t cover the generic of the 10mg capsules, it only covers the name brand. Of course, because it’s a controlled substance, the pharmacy needs a paper copy of the script…no fax allowed. At 3:30pm, there was no way that I could get to the office of the Dr. an hour away to get the script, then get it to the pharmacy. So, poor Abby went to school today without her meds…and she had a crappy day. She has been doing splendidly. I had told her that if she got a smiley face for behavior, that I would give her five dollars toward a book at the bookstore (that is big, HUGE motivation) and she just couldn’t hold it together all day. I feel so horrible…but, Rob was able to get the script today, and I’ll have it in my hot little hand for the morning, and all will be right with the world.
Looking forward to a quiet day for me tomorrow…I’ve got a ton to do, so I’m hoping for no sickies, no flares, no nothing.

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.