Update!

I've been getting a lot of messages from people who are curious about how Ricky is doing. He is doing okay! We got an appointment at 10:30, as previously mentioned, and headed up there.

Ricky slept most of the way there. When we got there he did not have an x-ray like last time, but he did have his vitals taken and have spirometry. His oxygen saturation was up to 97-98, which was a definite improvement, and his spirometry was actually almost up to baseline. Also, his lungs sounded not too bad. There was some consolidation in the lower lobes, which follows what has been going on with him. Ricky repeatedly complained about his upper chest and throat being congested.

I found out that his sputum culture from last week had eventually grown a bug that he hasn't cultured in many years... Stenotrophomonas Maltophilia. I just looked back in the Cystic-L archives and found that it was 2001 when he last cultured it! (I'm actually going back and transferring that message to Cystic-L over to this blog, so if you see it pop up in my feed please don't be alarmed!) The good news about this bug, though it is a medium-bad one, is that it is sensitive to a few good midrange antibiotics, and the one they chose to put Ricky on is Bactrim. He will be off the Rifampin (no more orange pee, tears, sputum, and spit!). He is also going onto a slightly longer course of Prednisone and they upped his Singulair dosage to a higher one. He has been on the 5mg chewables and he weighs enough now to go to the adult dose of 10mg non-chewable tablets.

Before we left the clinic, Ricky had blood drawn for an aspergillus panel. Looking back, I see that when he was hospitalized in 2001 for the s. maltophilia, was when he first had issues with aspergillus (which is a mold that can grow in CF lungs because of all of the antibiotics that CFers are on).

We are also going to continue the increased treatments and hope for the best. I am really hoping that he can go back to school tomorrow. Keep your fingers crossed. :) He'll be getting extra treatments still. If he gets worse we need to go back in, but at this point I'm thinking that he'll start to improve. The Prednisone is going to go on longer this time, and that should help... It was after he finished the Prednisone before that he started to feel worse.

Thursday is when they'll be doing the prizes for the magazine fundraising drive that Ricky was so excited about, so at the very least it would be good if he were back by then.

So, yay. :) Go Ricky!