Ricky news

I will get back to reporting on our San Francisco trip tomorrow, but for now I wanted to give a couple of updates on Ricky.

Today I was actually home with Andrew, who was sick with a sore throat and cough (which hopefully the other two kids and I do not catch). I hated to miss work, but it was also nice to get a few things done around the house and run some errands.

In the afternoon as I was clipping coupons, I got a call from the nurse at the CF clinic. She said, "I'm calling you about Ricky's sputum culture results..." and I felt my heart drop. They never call unless it's bad news. I was envisioning the really bad bugs... cepacia, MRSA. But thank goodness, once I caught my breath, I found out that it was neither of those. The news is that he is still culturing the stenotrophomonas maltophilia that he grew the last time, and also that he's showing pseudomonas again. This is one he has had off and on since he was 2 (but went a number of years without culturing it). Now, however, he is culturing two strains. One of them is most prevalent, and there is a secondary strain that showed just a little spot. They are not mucoid. The good news is that all three of these bugs are sensitive to multiple drugs. The best one is Ciprofloxacin, but Ricky gets a nasty arthritic reaction to Cipro, so unfortunately we can't use it. The nurse called in a prescription for Septra (double strength -- that'll be fun for his intestines) and instructed me to put him back on the TOBI inhaled antibiotic, which I'd already called in a refill for since he was supposed to start it a while back. I'd put it off because of the constant change in insurance. After he has been off the TOBI for a week, we go back in for another sputum culture. Keeping our fingers crossed!

Later in the afternoon, when I was waiting for the boys at separate appointments at the same place, the endocrinologist finally called me back. I had called Tuesday late in the day and again this morning. Today I was told that they were not in today. Huh. I had asked the CF nurse to look at the numbers for me, and she told me that they were all within normal limits. I knew that wasn't usually the whole story so I waited to hear from the endocrinology fellow. When she called, she informed me that his thyroid levels are fine. His prolactin hormone level is fine (a high level could have meant a problem with the thyroid, I believe). His growth hormone and testosterone are on the low end of normal. This means he is definitely not in puberty. I told her I'd been unable to find the CD of the MRI images (which is making me nuts, believe me). She said they'd have no problem doing another MRI when he goes back in a few months if his levels are still not rising. She also said that they wait til boys turn 14 before they worry too much about puberty being late (that's a year from now). At that time they would consider testosterone therapy.

So, whew. That's a lot of news for one day. The good news is that he's not sick at the moment (at least not that we can see! the lungs are another story). He is doing okay in school (not the most spectacular report card last week, but he's trying harder now). And he's a happy, smart, fun kid. :)