Thanks ladies. I did get the report but I don't think it was the full version. It just said 7T/9T variants, no mutations found, 1% chance he has CF.
MamaScarlett, I agree. We are now doing CPT 3-4 times a day as we had when he first started coughing. He seems sore though and doesn't like it but once he relaxes, it gets better and his cough is so thick, it is good to see him get it out. His temperature is back to that low-grade not-really-a-fever-fever. All day he was between 99.7 and 100.4. I know this is when things are brewing for him. And his voice is really scratchy, his throat seems raw from coughing. I am just so bummed because he just finished three weeks of bactrim only to be back on it three days later for another 2 weeks!
He has had a CT which showed atelectasis and bronchial wall thickening. The radiologist and pulmonologist disagree about the extent of the damage but it is there at least to some degree. The pulm said there was a little bit of mucus plugging (which I assumed since there is atelectasis) We are seen at a CF clinic. They are the ones who started off saying it was asthma but now they say they don't know what it is. Part of me is fine with this if we can at least get him treatment. Part of me is going totally insane since the treatment we are getting hasn't helped him kick the cough yet.
I am getting really frustrated and feel so helpless. He is not lying around crying about it but it just doesn't seem right, or fair to feel low-grade crappy all the time, have to stop the fun to neb/CPT/g-tube/inhaler all when no one knows what is wrong. Not that knowing you have a terrible disease is better, I am not saying that at all. But the added factor of not knowing the enemy doesn't help make this exhausting life more manageable. Sorry for the pity party, I am just tired and sad for him.
MamaScarlett, I agree. We are now doing CPT 3-4 times a day as we had when he first started coughing. He seems sore though and doesn't like it but once he relaxes, it gets better and his cough is so thick, it is good to see him get it out. His temperature is back to that low-grade not-really-a-fever-fever. All day he was between 99.7 and 100.4. I know this is when things are brewing for him. And his voice is really scratchy, his throat seems raw from coughing. I am just so bummed because he just finished three weeks of bactrim only to be back on it three days later for another 2 weeks!
He has had a CT which showed atelectasis and bronchial wall thickening. The radiologist and pulmonologist disagree about the extent of the damage but it is there at least to some degree. The pulm said there was a little bit of mucus plugging (which I assumed since there is atelectasis) We are seen at a CF clinic. They are the ones who started off saying it was asthma but now they say they don't know what it is. Part of me is fine with this if we can at least get him treatment. Part of me is going totally insane since the treatment we are getting hasn't helped him kick the cough yet.
I am getting really frustrated and feel so helpless. He is not lying around crying about it but it just doesn't seem right, or fair to feel low-grade crappy all the time, have to stop the fun to neb/CPT/g-tube/inhaler all when no one knows what is wrong. Not that knowing you have a terrible disease is better, I am not saying that at all. But the added factor of not knowing the enemy doesn't help make this exhausting life more manageable. Sorry for the pity party, I am just tired and sad for him.