We have a plan.

I called the CF nurse this morning after Ricky woke me up at 5:30am unable to breathe well, and having an upset stomach. I left a message that we needed to come in.

He had a neuro visit scheduled for 1 and the CF nurse called back later and said to come in at 11. So Ricky and I dropped Misty off at day care and headed up to Stanford.

Ricky has lost a little weight and is down to 97 pounds but he's up to 62 inches (5'2"). His oxygen saturation was 98 -- excellent -- and his spirometry was right where it has been for quite some time. His lungs sounded great as well. The doctor asked a lot of questions and, combined with the physical examination, concluded that whatever is going on with him, which is definitely significant, is not pulmonary.

So we had lunch at Taco Bell and then came back for his neurology appointment. First we saw a resident, because Ricky's doctor had been called to the OR. He came later. Both of them did thorough neuro exams on Ricky and apparently he was okay there. The ultimate decision was to back off on the Topamax so that he'd be on his old dose, and see if all of this stuff stops.

Our last appointment of the day was his bone density scan. That was fine... He was very good for it. :)

So I backed off on the Topamax tonight and by tomorrow he'll be on his old dose (25mg two times per day). Hopefully he starts to feel better.

Ricky's sick

For about a week now, Ricky's dizziness has been far more severe (along with periodic fever and chills). He's been sleeping a lot more (like 8+ hours in the middle of the day one day last week!). He's had headaches and stomach aches, and just hasn't been feeling well.

The CF doc prescribed Septra, which I couldn't understand. This was clearly a virus as far as I could tell and the CF nurse could tell.

Well, then, today, Ricky slept all day yet again (he has had at least 4 hours of nap(s) every day since this started) and this evening, even after his breathing treatments, his chest was tight. He said that last night he'd had trouble getting to sleep because his breathing was bad.

Tomorrow he has an appointment with the neurologist and an appointment for his yearly bone density scan. Those are both up at Stanford and I'm going to try to get us there early so we can maybe see someone in the CF clinic. I do not like how quickly this has gone downhill!