sputum culture final results and a bit of ranting

In case anyone has wondered, this is what Ricky's sputum culture results look like (you can click on the picture to see it bigger). He gets one of these done every time he is in clinic or in the hospital. They have a new policy of sending the final results to us in the mail, and so here is the one from this month.

I have never scanned one of these in before, but I guess this one is monumental in that it shows s. maltophilia and two strains of pseudomonas, along with the thrush (the candida) that he almost always has. He has had the s. maltophilia and the pseudomonas before, but never both at the same time, unless I'm wildly mistaken. He's actually doing pretty well at the moment, but this could be a portent of worsening lung health. We'll just have to stay on top of things and see how it goes. Prevention is the easiest way to prevent worsening lung disease, for sure.

And in that vein, it took me several days to get SOMEONE (CCS or HealthNet, the insurance we have through Healthy Families) to finally pay for his TOBI (along with his digestive enzymes -- which he needs to take in order to live, his Flonase, DuoNeb, and hypertonic saline) that I called in refills for on Tuesday. In the meantime he ran out of everything but the enzymes (though I at least had separate Atrovent and Albuterol leftover from before that I was able to use in place of the DuoNeb, which is probably the most important of the missing meds) and he was not able to start the TOBI for the first time in a couple of months. This time the bureaucratic stuff may have actually affected his health, and I am not too happy about it. The pharmacist actually spent most of the afternoon on Friday trying to get someone to do their job over at CCS, and it finally got resolved just before 5:00. If it hadn't, Ricky would have had to go the whole weekend without medication.

We have CCS in order to get medications, procedures, and doctor visits paid for that insurance doesn't cover. Instead of that happening, they appear to tie things up irretrievably in bureaucracy, and it drives me absolutely insane. When Ricky's mental health was similarly tied up in the summer of 2007, I actually wrote to the governor's office and the county supervisor's office, and those folks were only mildly helpful. In the end, it was my efforts and those of our particularly excellent county social worker that finally got things done for Ricky.

Okay, that's enough of that. Today we had Thanksgiving with our family at my mom's house, because Misty will be with Dave and his family in Oregon for actual Thanksgiving. It was a very nice Thanksgiving dinner and as usual it was great to be with our family. We also celebrated Ricky's 13th (!!!) birthday, even though it is not officially until Wednesday.