So, about as soon as I posted my trying-to-look-on-the-bright-side post yesterday about insurance Gess called to tell me he had an episode of hemoptysis. Ughhh. He has been feeling better, with the exception of the pain. That is what is so weird about this. He is #1 bleeding and #2 in pain and he doesn't seem to have some active big lung thing going on. Usually the bleeding and pain come with an exacerbation. So, I don't know what the heck is going on, and it looks like the doctors don't either.
We did go to the pain clinic today and had a good visit. The pain had increased pretty significantly in both frequency and intensity, which is obviously a concern to everyone. The demoral doesn't work well for this really. So, now we are on the hunt for a better solution. The doctor wants him to try Pregabalin. He tried it once before and it made him "loopy" so he is not optimistic about this, but I am going to press him. We need to find something that works that he can tolerate. He left the clinic in a pretty foul mood, which I can understand. I know that in my mind, these changes are a progression of CF and are an idea of what is to come...which of course is not something we want to think about.
So...we'll see.
Up next, sleep study tomorrow night (which means I get a free Saturday night and the entire bed to myself!! :) ). Then gastric emptying study next week.
Oh, he is also participating in some research study and gets to use a portable spirometer. Pretty cool!
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2 comments:
Hi -- thanks for your comment on the Liam blog. Will's already home. Very strange. He isn't particularly better (except for the hydration, which helps a lot), but he isn't worse and they can't get cultures to grow anything they're worried about besides RSV, so they sent him home. Hope you are well and getting your stride back. Give a yell if you're every down this way!
Hope the pain med works. I'm sure he's about ready to try anything.
Stacey
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