Many questions--1 post

A

ashmomo

New member
First off, my 5 year old daughter has been coughing (productive) for a few months or more now. We have been through multiple antibiotics. Cipro ends today after 3 weeks and she has one more week of Tobi. Just started on Hyper Sal 7% last week. She coughs hard while nebbing this. Seems to help some, but she is still coughing and it still sounds nasty when she does. I have to say the cough has decreased in frequency, but not enough to say that she is better by any means. At last weeks clinic visit they heard crackling in her right lower lobe...x-ray showed 'peripheral bronchial thickening'. She has been culturing Staph for about 9 months now...this past one showed clear?? (I assume this is what is causing her lung issues though, correct?)

So my questions here are:
What is 'peripheral bronchial thickening'?
Should there be concern? (the CF nurse said this is normal in CF...no concern)
When do we say enough is enough? They have talked about admittance...but it has been put off so far.
Does it sound like time for her to be admitted for IVs?

If she does get admitted, I am in NO WAY emotionally ready for this! Any HOSPITAL ADVICE for a 5 year old would be nice. Consider I have a 9 month old w/ CF at home also COUGHING for the past 4 days...and is a mommy's girl. This will be tricky! I am sure to break down at the words 'She WILL BE admitted'. I could break down here just thinking about it, not sure what will happen when and if it becomes reality...which is seeping up quickly <img src="i/expressions/face-icon-small-blush.gif" border="0">(

She goes to the ped to listen to her lungs again tomorrow. Hopefully she sounds better, but listening to her cough myself, I am highly doubting that <img src="i/expressions/face-icon-small-blush.gif" border="0">(

Sorry for SO many questions...we have not had any lung issues with her until now. I KNOW I have more questions, but for some reason my mind has lost them! Maybe they will come to me later...
Thanks for all responses and advice. If she does get admitted, I would like to be as prepared as possible and make her as comfortable as possible. If she doesn't, at least I will still have this advice for when it does happen <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
A

ashmomo

New member
First off, my 5 year old daughter has been coughing (productive) for a few months or more now. We have been through multiple antibiotics. Cipro ends today after 3 weeks and she has one more week of Tobi. Just started on Hyper Sal 7% last week. She coughs hard while nebbing this. Seems to help some, but she is still coughing and it still sounds nasty when she does. I have to say the cough has decreased in frequency, but not enough to say that she is better by any means. At last weeks clinic visit they heard crackling in her right lower lobe...x-ray showed 'peripheral bronchial thickening'. She has been culturing Staph for about 9 months now...this past one showed clear?? (I assume this is what is causing her lung issues though, correct?)

So my questions here are:
What is 'peripheral bronchial thickening'?
Should there be concern? (the CF nurse said this is normal in CF...no concern)
When do we say enough is enough? They have talked about admittance...but it has been put off so far.
Does it sound like time for her to be admitted for IVs?

If she does get admitted, I am in NO WAY emotionally ready for this! Any HOSPITAL ADVICE for a 5 year old would be nice. Consider I have a 9 month old w/ CF at home also COUGHING for the past 4 days...and is a mommy's girl. This will be tricky! I am sure to break down at the words 'She WILL BE admitted'. I could break down here just thinking about it, not sure what will happen when and if it becomes reality...which is seeping up quickly <img src="i/expressions/face-icon-small-blush.gif" border="0">(

She goes to the ped to listen to her lungs again tomorrow. Hopefully she sounds better, but listening to her cough myself, I am highly doubting that <img src="i/expressions/face-icon-small-blush.gif" border="0">(

Sorry for SO many questions...we have not had any lung issues with her until now. I KNOW I have more questions, but for some reason my mind has lost them! Maybe they will come to me later...
Thanks for all responses and advice. If she does get admitted, I would like to be as prepared as possible and make her as comfortable as possible. If she doesn't, at least I will still have this advice for when it does happen <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
A

ashmomo

New member
First off, my 5 year old daughter has been coughing (productive) for a few months or more now. We have been through multiple antibiotics. Cipro ends today after 3 weeks and she has one more week of Tobi. Just started on Hyper Sal 7% last week. She coughs hard while nebbing this. Seems to help some, but she is still coughing and it still sounds nasty when she does. I have to say the cough has decreased in frequency, but not enough to say that she is better by any means. At last weeks clinic visit they heard crackling in her right lower lobe...x-ray showed 'peripheral bronchial thickening'. She has been culturing Staph for about 9 months now...this past one showed clear?? (I assume this is what is causing her lung issues though, correct?)

So my questions here are:
What is 'peripheral bronchial thickening'?
Should there be concern? (the CF nurse said this is normal in CF...no concern)
When do we say enough is enough? They have talked about admittance...but it has been put off so far.
Does it sound like time for her to be admitted for IVs?

If she does get admitted, I am in NO WAY emotionally ready for this! Any HOSPITAL ADVICE for a 5 year old would be nice. Consider I have a 9 month old w/ CF at home also COUGHING for the past 4 days...and is a mommy's girl. This will be tricky! I am sure to break down at the words 'She WILL BE admitted'. I could break down here just thinking about it, not sure what will happen when and if it becomes reality...which is seeping up quickly <img src="i/expressions/face-icon-small-blush.gif" border="0">(

She goes to the ped to listen to her lungs again tomorrow. Hopefully she sounds better, but listening to her cough myself, I am highly doubting that <img src="i/expressions/face-icon-small-blush.gif" border="0">(

Sorry for SO many questions...we have not had any lung issues with her until now. I KNOW I have more questions, but for some reason my mind has lost them! Maybe they will come to me later...
Thanks for all responses and advice. If she does get admitted, I would like to be as prepared as possible and make her as comfortable as possible. If she doesn't, at least I will still have this advice for when it does happen <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
A

ashmomo

New member
First off, my 5 year old daughter has been coughing (productive) for a few months or more now. We have been through multiple antibiotics. Cipro ends today after 3 weeks and she has one more week of Tobi. Just started on Hyper Sal 7% last week. She coughs hard while nebbing this. Seems to help some, but she is still coughing and it still sounds nasty when she does. I have to say the cough has decreased in frequency, but not enough to say that she is better by any means. At last weeks clinic visit they heard crackling in her right lower lobe...x-ray showed 'peripheral bronchial thickening'. She has been culturing Staph for about 9 months now...this past one showed clear?? (I assume this is what is causing her lung issues though, correct?)

So my questions here are:
What is 'peripheral bronchial thickening'?
Should there be concern? (the CF nurse said this is normal in CF...no concern)
When do we say enough is enough? They have talked about admittance...but it has been put off so far.
Does it sound like time for her to be admitted for IVs?

If she does get admitted, I am in NO WAY emotionally ready for this! Any HOSPITAL ADVICE for a 5 year old would be nice. Consider I have a 9 month old w/ CF at home also COUGHING for the past 4 days...and is a mommy's girl. This will be tricky! I am sure to break down at the words 'She WILL BE admitted'. I could break down here just thinking about it, not sure what will happen when and if it becomes reality...which is seeping up quickly <img src="i/expressions/face-icon-small-blush.gif" border="0">(

She goes to the ped to listen to her lungs again tomorrow. Hopefully she sounds better, but listening to her cough myself, I am highly doubting that <img src="i/expressions/face-icon-small-blush.gif" border="0">(

Sorry for SO many questions...we have not had any lung issues with her until now. I KNOW I have more questions, but for some reason my mind has lost them! Maybe they will come to me later...
Thanks for all responses and advice. If she does get admitted, I would like to be as prepared as possible and make her as comfortable as possible. If she doesn't, at least I will still have this advice for when it does happen <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
A

ashmomo

New member
First off, my 5 year old daughter has been coughing (productive) for a few months or more now. We have been through multiple antibiotics. Cipro ends today after 3 weeks and she has one more week of Tobi. Just started on Hyper Sal 7% last week. She coughs hard while nebbing this. Seems to help some, but she is still coughing and it still sounds nasty when she does. I have to say the cough has decreased in frequency, but not enough to say that she is better by any means. At last weeks clinic visit they heard crackling in her right lower lobe...x-ray showed 'peripheral bronchial thickening'. She has been culturing Staph for about 9 months now...this past one showed clear?? (I assume this is what is causing her lung issues though, correct?)
<br />
<br />So my questions here are:
<br />What is 'peripheral bronchial thickening'?
<br />Should there be concern? (the CF nurse said this is normal in CF...no concern)
<br />When do we say enough is enough? They have talked about admittance...but it has been put off so far.
<br />Does it sound like time for her to be admitted for IVs?
<br />
<br />If she does get admitted, I am in NO WAY emotionally ready for this! Any HOSPITAL ADVICE for a 5 year old would be nice. Consider I have a 9 month old w/ CF at home also COUGHING for the past 4 days...and is a mommy's girl. This will be tricky! I am sure to break down at the words 'She WILL BE admitted'. I could break down here just thinking about it, not sure what will happen when and if it becomes reality...which is seeping up quickly <img src="i/expressions/face-icon-small-blush.gif" border="0">(
<br />
<br />She goes to the ped to listen to her lungs again tomorrow. Hopefully she sounds better, but listening to her cough myself, I am highly doubting that <img src="i/expressions/face-icon-small-blush.gif" border="0">(
<br />
<br />Sorry for SO many questions...we have not had any lung issues with her until now. I KNOW I have more questions, but for some reason my mind has lost them! Maybe they will come to me later...
<br />Thanks for all responses and advice. If she does get admitted, I would like to be as prepared as possible and make her as comfortable as possible. If she doesn't, at least I will still have this advice for when it does happen <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
Y

ymikhale

New member
Sorry you are going through this. I cannot answer all of your questions but can tell you my experience with bronchial wall thickening.

My daughter (2 y/o)also had bronchial wall thickening for the past 9 months but she did not have any cough though , while it sounds like yours is having an exacerbation.

When I asked her doc about it she said that it could be congestion or inflammation and that it was reversible. They were not worried about it either (and I was not at all happy about that), but I was, which I think is normal when something new shows up on the x ray. They said they were going to watch it.

After I made many changes in her environment, the bronchial wall thickening is no longer there as of last week.

I am by no means suggesting that making changes in your home is enough when she is so sick but it could be something you could think about when she gets better.

good luck
 
Y

ymikhale

New member
Sorry you are going through this. I cannot answer all of your questions but can tell you my experience with bronchial wall thickening.

My daughter (2 y/o)also had bronchial wall thickening for the past 9 months but she did not have any cough though , while it sounds like yours is having an exacerbation.

When I asked her doc about it she said that it could be congestion or inflammation and that it was reversible. They were not worried about it either (and I was not at all happy about that), but I was, which I think is normal when something new shows up on the x ray. They said they were going to watch it.

After I made many changes in her environment, the bronchial wall thickening is no longer there as of last week.

I am by no means suggesting that making changes in your home is enough when she is so sick but it could be something you could think about when she gets better.

good luck
 
Y

ymikhale

New member
Sorry you are going through this. I cannot answer all of your questions but can tell you my experience with bronchial wall thickening.

My daughter (2 y/o)also had bronchial wall thickening for the past 9 months but she did not have any cough though , while it sounds like yours is having an exacerbation.

When I asked her doc about it she said that it could be congestion or inflammation and that it was reversible. They were not worried about it either (and I was not at all happy about that), but I was, which I think is normal when something new shows up on the x ray. They said they were going to watch it.

After I made many changes in her environment, the bronchial wall thickening is no longer there as of last week.

I am by no means suggesting that making changes in your home is enough when she is so sick but it could be something you could think about when she gets better.

good luck
 
Y

ymikhale

New member
Sorry you are going through this. I cannot answer all of your questions but can tell you my experience with bronchial wall thickening.

My daughter (2 y/o)also had bronchial wall thickening for the past 9 months but she did not have any cough though , while it sounds like yours is having an exacerbation.

When I asked her doc about it she said that it could be congestion or inflammation and that it was reversible. They were not worried about it either (and I was not at all happy about that), but I was, which I think is normal when something new shows up on the x ray. They said they were going to watch it.

After I made many changes in her environment, the bronchial wall thickening is no longer there as of last week.

I am by no means suggesting that making changes in your home is enough when she is so sick but it could be something you could think about when she gets better.

good luck
 
Y

ymikhale

New member
Sorry you are going through this. I cannot answer all of your questions but can tell you my experience with bronchial wall thickening.
<br />
<br />My daughter (2 y/o)also had bronchial wall thickening for the past 9 months but she did not have any cough though , while it sounds like yours is having an exacerbation.
<br />
<br />When I asked her doc about it she said that it could be congestion or inflammation and that it was reversible. They were not worried about it either (and I was not at all happy about that), but I was, which I think is normal when something new shows up on the x ray. They said they were going to watch it.
<br />
<br />After I made many changes in her environment, the bronchial wall thickening is no longer there as of last week.
<br />
<br />I am by no means suggesting that making changes in your home is enough when she is so sick but it could be something you could think about when she gets better.
<br />
<br />good luck
 
K

kitomd21

New member
My daughter's XRAY showed bronchial thickening as well. Her doctor started her on Pulmozyme and said that the appearance is reversible at this point but that we must start Pulmozyme. No follow up XRAY yet to show improvement.

Ymikhale - what environmental changes did you make and which meds is your daughter taking?
 
K

kitomd21

New member
My daughter's XRAY showed bronchial thickening as well. Her doctor started her on Pulmozyme and said that the appearance is reversible at this point but that we must start Pulmozyme. No follow up XRAY yet to show improvement.

Ymikhale - what environmental changes did you make and which meds is your daughter taking?
 
K

kitomd21

New member
My daughter's XRAY showed bronchial thickening as well. Her doctor started her on Pulmozyme and said that the appearance is reversible at this point but that we must start Pulmozyme. No follow up XRAY yet to show improvement.

Ymikhale - what environmental changes did you make and which meds is your daughter taking?
 
K

kitomd21

New member
My daughter's XRAY showed bronchial thickening as well. Her doctor started her on Pulmozyme and said that the appearance is reversible at this point but that we must start Pulmozyme. No follow up XRAY yet to show improvement.

Ymikhale - what environmental changes did you make and which meds is your daughter taking?
 
K

kitomd21

New member
My daughter's XRAY showed bronchial thickening as well. Her doctor started her on Pulmozyme and said that the appearance is reversible at this point but that we must start Pulmozyme. No follow up XRAY yet to show improvement.
<br />
<br />Ymikhale - what environmental changes did you make and which meds is your daughter taking?
 
A

ashmomo

New member
Ashlee has been on Pulmozyme since 2 years of age. It has been increased to twice per day for like the past month or so. Plus plenty other meds...

I am curious also about environmental changes...it is hard as our trailer is quite old and small. Wish we could get something bigger/nicer...soon! I can't argue that I am sure lots could help around our house...esp windows! Our windows are terrible <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
A

ashmomo

New member
Ashlee has been on Pulmozyme since 2 years of age. It has been increased to twice per day for like the past month or so. Plus plenty other meds...

I am curious also about environmental changes...it is hard as our trailer is quite old and small. Wish we could get something bigger/nicer...soon! I can't argue that I am sure lots could help around our house...esp windows! Our windows are terrible <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
A

ashmomo

New member
Ashlee has been on Pulmozyme since 2 years of age. It has been increased to twice per day for like the past month or so. Plus plenty other meds...

I am curious also about environmental changes...it is hard as our trailer is quite old and small. Wish we could get something bigger/nicer...soon! I can't argue that I am sure lots could help around our house...esp windows! Our windows are terrible <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
A

ashmomo

New member
Ashlee has been on Pulmozyme since 2 years of age. It has been increased to twice per day for like the past month or so. Plus plenty other meds...

I am curious also about environmental changes...it is hard as our trailer is quite old and small. Wish we could get something bigger/nicer...soon! I can't argue that I am sure lots could help around our house...esp windows! Our windows are terrible <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
A

ashmomo

New member
Ashlee has been on Pulmozyme since 2 years of age. It has been increased to twice per day for like the past month or so. Plus plenty other meds...
<br />
<br />I am curious also about environmental changes...it is hard as our trailer is quite old and small. Wish we could get something bigger/nicer...soon! I can't argue that I am sure lots could help around our house...esp windows! Our windows are terrible <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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