Let's see...where did I leave off? Hmmm...oh yeah, it was Tuesday, she was sick and we were going to see the pediatrician the next day. So that's what we did! Her lungs didn't sound stellar, but there were no obvious crackles yet. Yet being the key word, as this is KayTar's pneumonia pattern. URI that resolves, a couple of days later she has a new onset fever, wet cough...we go to the pediatrician and her lungs sound yucky, but not quite crackling, so we wait and see, and 1-2 days later, we are back in for full-blown pneumonia! So this time, the pediatrician just decided to call it and treat. Generally speaking, I'm not in favor of antibiotics in these iffy cases and prefer to wait it out, but we've been through this enough for me to be pretty sure of where she was heading if we didn't treat. She hasn't had antibiotics since her pneumonia last February, so I was okay with it, as was the pediatrician. So she is on a course of Suprax and using Pulmicort once daily until she's sounding better.
We got her prescriptions filled on Wednesday, we paid $50 for them. On the pamphlets, it said, "Your insurance saved you $303.99 and $603.99." Can you believe that? $908+50=$958...high enough to be rounded to A GRAND! This is why I have a series of small panic attacks every time we resubmit our CHIP paperwork. This was just one illness...a drop in the bucket compared to the overall costs of keeping our girl running!
Speaking of CHIP, our appeal to change health plans was denied. We have to wait until our yearly renewal period to change health plans. Ugh. I'm not happy about this...I really, really want her to be seen by pulmonology. I feel like we've already been sitting on these breathing problems for too long, several more months is not acceptable to me. Not to mention, we are supposed to see the new geneticist in two weeks...and not doing that will delay further testing and our next appointment with her mito doc. I'm not sure what we need to do here, but I'm not really okay with putting it all off for so long. At least we HAVE insurance, though.
At the pediatrician visit, she and I discussed how KayTar's gut issues have been since the last visit. She brought up something I mentioned to her in an email after the GI visit, which was that the GI suggested that it may be disease progression. She said that she thinks of KayTar as a kid who has some challenges and limitations, but she's made such great strides and is always moving upward, so she never thinks of her in those progressive disease terms. She said, "It kind of made me..." and she paused, looked at me with a bit of concern in her eyes, put her hand on her heart, and frowned a little..."to think of her like that." It was one of those moments where I thought, "Gosh, we're lucky to have a doctor so invested in our girl." and "That is the kind of doctor I want to be." all at the same time. A lot of things are uncertain in life with KayTar, but it is much easier to handle with wonderful people on her team.
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