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.
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