wwyd?

[mom2owen]

Liza, I will increase his CPT, it seems like a good idea, it does seem to help even at once a day. I have a feeling your busy son and mine might be a lot alike <img src="i/expressions/face-icon-small-smile.gif" border="0"> I like your idea of mini sessions! He did have a CT scan without contrast dye. It showed atelectasis/scarring and bronchial wall thickening. Maybe it is from that that he still coughs...The mucus this time seems a bit thicker and harder to cough up so hopefully we will either have successful CPT or maybe a med change to help with that.
<br />Rebjane and Tonya, thanks for your thoughts. I think the bronchoscopy is probably what we will do. I don't expect miracles but sure do hope for something to make some sense and give direction. When it was first suggested, I was thinking she just wanted to do it to say she did something. I think I was wrong about that...It will just take some time for me to understand her ways and for her to get to know Owen. He has been under general many times, although I don't like it, I was actually more worried about irritating his lungs when they look around. Obviously there are lots of people who have them, I need to trust and relax on that one I think.
<br />Printer, I can and will talk to our doctor but we have had a really hard time with things and I always like to bounce ideas off people here. When the diagnosis is not made simple, I think it is pretty normal to have even more questions about what should be done, what meds should be used, etc. We are figuring it all out but I could never do it without the people here!
<br />Thanks for your thoughts, I appreciate it all.

 

[Ratatosk]

I wonder, too about asking about hypertonic saline (HTS). Know you're doing pulmozyme, but hts works differently to help get that junk up and out of his lungs.

 

[Ratatosk]

I wonder, too about asking about hypertonic saline (HTS). Know you're doing pulmozyme, but hts works differently to help get that junk up and out of his lungs.

 

[Ratatosk]

I wonder, too about asking about hypertonic saline (HTS). Know you're doing pulmozyme, but hts works differently to help get that junk up and out of his lungs.

 

[edan]

Agreed. HTS is the miracle "non-drug". When dd is sick, nothing works better than that for her.

 

[edan]

Agreed. HTS is the miracle "non-drug". When dd is sick, nothing works better than that for her.

 

[edan]

Agreed. HTS is the miracle "non-drug". When dd is sick, nothing works better than that for her.

 

[mom2owen]

Well, I FINALLY talked to our doctor today and she wants us to keep Owen on Bactrim for two more weeks and do albuterol nebs and CPT twice a day instead of once. She said it was a good sign that while he was on Bactrim things got better and also was encouraged that his mucus is thicker instead of loose and runny, she is thinking it means it is on it's way out and he will stop making so much sputum.
She forgot to call the meds in to the pharmacy so I have to wait til tomorrow to get him back on the abx. I sure hope it helps. She said the albuterol won't thin the mucus but did not say he needed something to do that. I suppose I was hoping for a little more but that is what I got. She said she will call next week to see how he is and if it's not better then, she will do the bronchoscopy. She also said to keep him on the Symbicort 160 for now so we can keep as much as we can the same to see what is helping. I hope the cough goes away so we can discuss getting him off of that since I am not convinced it helps him anyway.
And finally, she added that the Ambry results were normal (we knew that already) so while she still doesn't know what is wrong, she knows it's not CF. Sometimes I feel like that is what she wants me to hear, not how we can help Owen. I am fine with it not being CF, if that's totally true. But I sure wish they could tell me why he coughs like he does and how we can get rid of the Staph. I am a little surprised that this "light growth" of Staph will require 5 weeks of Bactrim and that three weeks was clearly not enough. He just never seems normal anymore and cough free. My gut says we are missing something but I guess we will have to wait and see. Could it be that he is growing something new since his last culture? Or does it just make sense that since he has probably had the Staph for so long, it just takes longer to get rid of it?
In the meantime, he is having coughing fits. It is not quite the same as before, he is not clearing his throat and having little coughs all the time, it comes in waves and he has to stop what he is doing until that episode is over. He coughs up mucus and I will look more closely to see what color it is now. He was nearly cough free this time last week. Ugh. So tired of worrying and having to keep my phone at the ready in case someone calls with something, anything we can try. But, I realize I am preaching to the choir on this one...

 

[mom2owen]

Well, I FINALLY talked to our doctor today and she wants us to keep Owen on Bactrim for two more weeks and do albuterol nebs and CPT twice a day instead of once. She said it was a good sign that while he was on Bactrim things got better and also was encouraged that his mucus is thicker instead of loose and runny, she is thinking it means it is on it's way out and he will stop making so much sputum.
She forgot to call the meds in to the pharmacy so I have to wait til tomorrow to get him back on the abx. I sure hope it helps. She said the albuterol won't thin the mucus but did not say he needed something to do that. I suppose I was hoping for a little more but that is what I got. She said she will call next week to see how he is and if it's not better then, she will do the bronchoscopy. She also said to keep him on the Symbicort 160 for now so we can keep as much as we can the same to see what is helping. I hope the cough goes away so we can discuss getting him off of that since I am not convinced it helps him anyway.
And finally, she added that the Ambry results were normal (we knew that already) so while she still doesn't know what is wrong, she knows it's not CF. Sometimes I feel like that is what she wants me to hear, not how we can help Owen. I am fine with it not being CF, if that's totally true. But I sure wish they could tell me why he coughs like he does and how we can get rid of the Staph. I am a little surprised that this "light growth" of Staph will require 5 weeks of Bactrim and that three weeks was clearly not enough. He just never seems normal anymore and cough free. My gut says we are missing something but I guess we will have to wait and see. Could it be that he is growing something new since his last culture? Or does it just make sense that since he has probably had the Staph for so long, it just takes longer to get rid of it?
In the meantime, he is having coughing fits. It is not quite the same as before, he is not clearing his throat and having little coughs all the time, it comes in waves and he has to stop what he is doing until that episode is over. He coughs up mucus and I will look more closely to see what color it is now. He was nearly cough free this time last week. Ugh. So tired of worrying and having to keep my phone at the ready in case someone calls with something, anything we can try. But, I realize I am preaching to the choir on this one...

 

[mom2owen]

Well, I FINALLY talked to our doctor today and she wants us to keep Owen on Bactrim for two more weeks and do albuterol nebs and CPT twice a day instead of once. She said it was a good sign that while he was on Bactrim things got better and also was encouraged that his mucus is thicker instead of loose and runny, she is thinking it means it is on it's way out and he will stop making so much sputum.
<br />She forgot to call the meds in to the pharmacy so I have to wait til tomorrow to get him back on the abx. I sure hope it helps. She said the albuterol won't thin the mucus but did not say he needed something to do that. I suppose I was hoping for a little more but that is what I got. She said she will call next week to see how he is and if it's not better then, she will do the bronchoscopy. She also said to keep him on the Symbicort 160 for now so we can keep as much as we can the same to see what is helping. I hope the cough goes away so we can discuss getting him off of that since I am not convinced it helps him anyway.
<br />And finally, she added that the Ambry results were normal (we knew that already) so while she still doesn't know what is wrong, she knows it's not CF. Sometimes I feel like that is what she wants me to hear, not how we can help Owen. I am fine with it not being CF, if that's totally true. But I sure wish they could tell me why he coughs like he does and how we can get rid of the Staph. I am a little surprised that this "light growth" of Staph will require 5 weeks of Bactrim and that three weeks was clearly not enough. He just never seems normal anymore and cough free. My gut says we are missing something but I guess we will have to wait and see. Could it be that he is growing something new since his last culture? Or does it just make sense that since he has probably had the Staph for so long, it just takes longer to get rid of it?
<br />In the meantime, he is having coughing fits. It is not quite the same as before, he is not clearing his throat and having little coughs all the time, it comes in waves and he has to stop what he is doing until that episode is over. He coughs up mucus and I will look more closely to see what color it is now. He was nearly cough free this time last week. Ugh. So tired of worrying and having to keep my phone at the ready in case someone calls with something, anything we can try. But, I realize I am preaching to the choir on this one...

 

[mom2owen]

One more question: Are personal steam inhalers a bad idea or a good one? Someone from the asthma forum mentioned doing them for congestion and coughing. I would guess you need sterile water for them? Just not sure what to think. I might just be nervous trying something without talking to our doctor but I am also willing to try something if others here think it might help...

 

[mom2owen]

One more question: Are personal steam inhalers a bad idea or a good one? Someone from the asthma forum mentioned doing them for congestion and coughing. I would guess you need sterile water for them? Just not sure what to think. I might just be nervous trying something without talking to our doctor but I am also willing to try something if others here think it might help...

 

[mom2owen]

One more question: Are personal steam inhalers a bad idea or a good one? Someone from the asthma forum mentioned doing them for congestion and coughing. I would guess you need sterile water for them? Just not sure what to think. I might just be nervous trying something without talking to our doctor but I am also willing to try something if others here think it might help...

 

[ymikhale]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2owen</b></i>

And finally, she added that the Ambry results were normal (we knew that already) so while she still doesn't know what is wrong, she knows it's not CF. </end quote></div>

Just a thought: did you ask for the actual report just to be sure what it says?

<div class="FTQUOTE"><begin quote>
I am a little surprised that this "light growth" of Staph will require 5 weeks of Bactrim and that three weeks was clearly not enough. </end quote></div>

I agree. Maybe you can ask to repeat the culture to see if something else is growing?</end quote></div>

 

[ymikhale]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2owen</b></i>

And finally, she added that the Ambry results were normal (we knew that already) so while she still doesn't know what is wrong, she knows it's not CF. </end quote>

Just a thought: did you ask for the actual report just to be sure what it says?

<div class="FTQUOTE"><begin quote>
I am a little surprised that this "light growth" of Staph will require 5 weeks of Bactrim and that three weeks was clearly not enough. </end quote>

I agree. Maybe you can ask to repeat the culture to see if something else is growing?</end quote>

 

[ymikhale]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2owen</b></i>
<br />
<br />And finally, she added that the Ambry results were normal (we knew that already) so while she still doesn't know what is wrong, she knows it's not CF. </end quote>
<br />
<br />Just a thought: did you ask for the actual report just to be sure what it says?
<br />
<br /><div class="FTQUOTE"><begin quote>
<br />I am a little surprised that this "light growth" of Staph will require 5 weeks of Bactrim and that three weeks was clearly not enough. </end quote>
<br />
<br />I agree. Maybe you can ask to repeat the culture to see if something else is growing?</end quote>
<br />
<br />

 

[mamaScarlett]

Just a thought, but when I (and most cfers here probably) are bringing up that much sputum, we do 3-4 chest pt sessions a day. Tons of hydration-he can drink whatever he wants, just lots of it.
I'd definitely do a lung CT before going into a bronch. Have you asked any cf centers if they'd be willing to see you regarding diagnosis?

 

[mamaScarlett]

Just a thought, but when I (and most cfers here probably) are bringing up that much sputum, we do 3-4 chest pt sessions a day. Tons of hydration-he can drink whatever he wants, just lots of it.
I'd definitely do a lung CT before going into a bronch. Have you asked any cf centers if they'd be willing to see you regarding diagnosis?

 

[mamaScarlett]

Just a thought, but when I (and most cfers here probably) are bringing up that much sputum, we do 3-4 chest pt sessions a day. Tons of hydration-he can drink whatever he wants, just lots of it.
<br />I'd definitely do a lung CT before going into a bronch. Have you asked any cf centers if they'd be willing to see you regarding diagnosis?
<br />

 

[mom2owen]

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.