Worried about my Lexi...

L

lexisangels05

New member
I am wondering if it might be time for some more IV's. We were in the hospital in June and did 5 weeks of Ceftazadine and Vanc. Lexi had ORSA and lots of Psuedomonas when they did her Bronch. Her persitant cough, which is the reason they did her Bronch only went away for a few weeks<img src="i/expressions/face-icon-small-sad.gif" border="0"> Her cough has progressively gotten worse over the last month. She coughs alot with her treatments and vest in the morning, a little during the day, and off and on at night. It sounds very wet, but she does not know how to spit anything out, so not sure of the color.

Her CF doc started her inhaled Tobi about a week early and she is always on Azithromycin 3x per week. What do you guys think? It is so hard with a little one. Her energy level seems fine, and she does not complain of feeling bad. It is just really hard to know exactly how she is feeling...
 
L

lexisangels05

New member
I am wondering if it might be time for some more IV's. We were in the hospital in June and did 5 weeks of Ceftazadine and Vanc. Lexi had ORSA and lots of Psuedomonas when they did her Bronch. Her persitant cough, which is the reason they did her Bronch only went away for a few weeks<img src="i/expressions/face-icon-small-sad.gif" border="0"> Her cough has progressively gotten worse over the last month. She coughs alot with her treatments and vest in the morning, a little during the day, and off and on at night. It sounds very wet, but she does not know how to spit anything out, so not sure of the color.

Her CF doc started her inhaled Tobi about a week early and she is always on Azithromycin 3x per week. What do you guys think? It is so hard with a little one. Her energy level seems fine, and she does not complain of feeling bad. It is just really hard to know exactly how she is feeling...
 
L

lexisangels05

New member
I am wondering if it might be time for some more IV's. We were in the hospital in June and did 5 weeks of Ceftazadine and Vanc. Lexi had ORSA and lots of Psuedomonas when they did her Bronch. Her persitant cough, which is the reason they did her Bronch only went away for a few weeks<img src="i/expressions/face-icon-small-sad.gif" border="0"> Her cough has progressively gotten worse over the last month. She coughs alot with her treatments and vest in the morning, a little during the day, and off and on at night. It sounds very wet, but she does not know how to spit anything out, so not sure of the color.

Her CF doc started her inhaled Tobi about a week early and she is always on Azithromycin 3x per week. What do you guys think? It is so hard with a little one. Her energy level seems fine, and she does not complain of feeling bad. It is just really hard to know exactly how she is feeling...
 
L

lexisangels05

New member
I am wondering if it might be time for some more IV's. We were in the hospital in June and did 5 weeks of Ceftazadine and Vanc. Lexi had ORSA and lots of Psuedomonas when they did her Bronch. Her persitant cough, which is the reason they did her Bronch only went away for a few weeks<img src="i/expressions/face-icon-small-sad.gif" border="0"> Her cough has progressively gotten worse over the last month. She coughs alot with her treatments and vest in the morning, a little during the day, and off and on at night. It sounds very wet, but she does not know how to spit anything out, so not sure of the color.

Her CF doc started her inhaled Tobi about a week early and she is always on Azithromycin 3x per week. What do you guys think? It is so hard with a little one. Her energy level seems fine, and she does not complain of feeling bad. It is just really hard to know exactly how she is feeling...
 
L

lexisangels05

New member
I am wondering if it might be time for some more IV's. We were in the hospital in June and did 5 weeks of Ceftazadine and Vanc. Lexi had ORSA and lots of Psuedomonas when they did her Bronch. Her persitant cough, which is the reason they did her Bronch only went away for a few weeks<img src="i/expressions/face-icon-small-sad.gif" border="0"> Her cough has progressively gotten worse over the last month. She coughs alot with her treatments and vest in the morning, a little during the day, and off and on at night. It sounds very wet, but she does not know how to spit anything out, so not sure of the color.
<br />
<br />Her CF doc started her inhaled Tobi about a week early and she is always on Azithromycin 3x per week. What do you guys think? It is so hard with a little one. Her energy level seems fine, and she does not complain of feeling bad. It is just really hard to know exactly how she is feeling...
 
M

MaksNana

New member
Dear Melissa,,,
I totally understand....Makailyn's cough is so bad she can't finish a sentence without coughing a wet, harsh cough...She hasn't been running a temp.. except for when she had the bowl obstuction in August...She'll play and run,,, but she's not eating as much,,and tires quicker..

She has alot of mucous which is sometimes clear as can be ,, but lately it has been yellow,, greyish green (don't know if that makes sence)but that's the only way I know how to describe the color....She's coughing so hard that sometimes there's streaks of blood....

The CF Clinic said to double up on her xopenex,,and they will work her in tomorrow,,,she already does xopenex 3 to 4 times a day and now it's 1time every hour for three hours and wait 3 hours and repeat 1 every 3hours...

She's pretty frustated because she is on a very aggressive regimen already....

Can Lexi do a huff ??? You could show her by huffing on a mirror,,and they usually think it's funny...But,when Makailyn was almost 3 I taught her to huff,, and within a couple of days,,, it was like cat hairball's.... Her mucous can be so bad at times she'll look like she's having the dry heave's sometimes,, from it being so thick ...

The only thing I can tell you is be persistant with talking to your CF Clinic...I know ,, the one here is like pulling teeth sometimes.....

It is so confusing sometimes if not most of the time ,,,, like,,yes they should cough ,but when is it to much, do they have to have a fever (which I have heard they do not have to have a fever to need anti's),, also if they are not coughing enough and the doctors hear crackles ,,then they need to be treated...I do believe it 's a life time of learning and then when you might learn something it will change....

It's just so COMPLEX,,,I took that word for granted until dealing with this disease!!!!
I'm sorry you and little Lexi are having to go through all this..Hope someone can give you some better answers..

Please keep us updated,, I would like to know how she's doing and what the doctors will do.... Karla
 
M

MaksNana

New member
Dear Melissa,,,
I totally understand....Makailyn's cough is so bad she can't finish a sentence without coughing a wet, harsh cough...She hasn't been running a temp.. except for when she had the bowl obstuction in August...She'll play and run,,, but she's not eating as much,,and tires quicker..

She has alot of mucous which is sometimes clear as can be ,, but lately it has been yellow,, greyish green (don't know if that makes sence)but that's the only way I know how to describe the color....She's coughing so hard that sometimes there's streaks of blood....

The CF Clinic said to double up on her xopenex,,and they will work her in tomorrow,,,she already does xopenex 3 to 4 times a day and now it's 1time every hour for three hours and wait 3 hours and repeat 1 every 3hours...

She's pretty frustated because she is on a very aggressive regimen already....

Can Lexi do a huff ??? You could show her by huffing on a mirror,,and they usually think it's funny...But,when Makailyn was almost 3 I taught her to huff,, and within a couple of days,,, it was like cat hairball's.... Her mucous can be so bad at times she'll look like she's having the dry heave's sometimes,, from it being so thick ...

The only thing I can tell you is be persistant with talking to your CF Clinic...I know ,, the one here is like pulling teeth sometimes.....

It is so confusing sometimes if not most of the time ,,,, like,,yes they should cough ,but when is it to much, do they have to have a fever (which I have heard they do not have to have a fever to need anti's),, also if they are not coughing enough and the doctors hear crackles ,,then they need to be treated...I do believe it 's a life time of learning and then when you might learn something it will change....

It's just so COMPLEX,,,I took that word for granted until dealing with this disease!!!!
I'm sorry you and little Lexi are having to go through all this..Hope someone can give you some better answers..

Please keep us updated,, I would like to know how she's doing and what the doctors will do.... Karla
 
M

MaksNana

New member
Dear Melissa,,,
I totally understand....Makailyn's cough is so bad she can't finish a sentence without coughing a wet, harsh cough...She hasn't been running a temp.. except for when she had the bowl obstuction in August...She'll play and run,,, but she's not eating as much,,and tires quicker..

She has alot of mucous which is sometimes clear as can be ,, but lately it has been yellow,, greyish green (don't know if that makes sence)but that's the only way I know how to describe the color....She's coughing so hard that sometimes there's streaks of blood....

The CF Clinic said to double up on her xopenex,,and they will work her in tomorrow,,,she already does xopenex 3 to 4 times a day and now it's 1time every hour for three hours and wait 3 hours and repeat 1 every 3hours...

She's pretty frustated because she is on a very aggressive regimen already....

Can Lexi do a huff ??? You could show her by huffing on a mirror,,and they usually think it's funny...But,when Makailyn was almost 3 I taught her to huff,, and within a couple of days,,, it was like cat hairball's.... Her mucous can be so bad at times she'll look like she's having the dry heave's sometimes,, from it being so thick ...

The only thing I can tell you is be persistant with talking to your CF Clinic...I know ,, the one here is like pulling teeth sometimes.....

It is so confusing sometimes if not most of the time ,,,, like,,yes they should cough ,but when is it to much, do they have to have a fever (which I have heard they do not have to have a fever to need anti's),, also if they are not coughing enough and the doctors hear crackles ,,then they need to be treated...I do believe it 's a life time of learning and then when you might learn something it will change....

It's just so COMPLEX,,,I took that word for granted until dealing with this disease!!!!
I'm sorry you and little Lexi are having to go through all this..Hope someone can give you some better answers..

Please keep us updated,, I would like to know how she's doing and what the doctors will do.... Karla
 
M

MaksNana

New member
Dear Melissa,,,
I totally understand....Makailyn's cough is so bad she can't finish a sentence without coughing a wet, harsh cough...She hasn't been running a temp.. except for when she had the bowl obstuction in August...She'll play and run,,, but she's not eating as much,,and tires quicker..

She has alot of mucous which is sometimes clear as can be ,, but lately it has been yellow,, greyish green (don't know if that makes sence)but that's the only way I know how to describe the color....She's coughing so hard that sometimes there's streaks of blood....

The CF Clinic said to double up on her xopenex,,and they will work her in tomorrow,,,she already does xopenex 3 to 4 times a day and now it's 1time every hour for three hours and wait 3 hours and repeat 1 every 3hours...

She's pretty frustated because she is on a very aggressive regimen already....

Can Lexi do a huff ??? You could show her by huffing on a mirror,,and they usually think it's funny...But,when Makailyn was almost 3 I taught her to huff,, and within a couple of days,,, it was like cat hairball's.... Her mucous can be so bad at times she'll look like she's having the dry heave's sometimes,, from it being so thick ...

The only thing I can tell you is be persistant with talking to your CF Clinic...I know ,, the one here is like pulling teeth sometimes.....

It is so confusing sometimes if not most of the time ,,,, like,,yes they should cough ,but when is it to much, do they have to have a fever (which I have heard they do not have to have a fever to need anti's),, also if they are not coughing enough and the doctors hear crackles ,,then they need to be treated...I do believe it 's a life time of learning and then when you might learn something it will change....

It's just so COMPLEX,,,I took that word for granted until dealing with this disease!!!!
I'm sorry you and little Lexi are having to go through all this..Hope someone can give you some better answers..

Please keep us updated,, I would like to know how she's doing and what the doctors will do.... Karla
 
M

MaksNana

New member
Dear Melissa,,,
<br />I totally understand....Makailyn's cough is so bad she can't finish a sentence without coughing a wet, harsh cough...She hasn't been running a temp.. except for when she had the bowl obstuction in August...She'll play and run,,, but she's not eating as much,,and tires quicker..
<br />
<br />She has alot of mucous which is sometimes clear as can be ,, but lately it has been yellow,, greyish green (don't know if that makes sence)but that's the only way I know how to describe the color....She's coughing so hard that sometimes there's streaks of blood....
<br />
<br />The CF Clinic said to double up on her xopenex,,and they will work her in tomorrow,,,she already does xopenex 3 to 4 times a day and now it's 1time every hour for three hours and wait 3 hours and repeat 1 every 3hours...
<br />
<br />She's pretty frustated because she is on a very aggressive regimen already....
<br />
<br />Can Lexi do a huff ??? You could show her by huffing on a mirror,,and they usually think it's funny...But,when Makailyn was almost 3 I taught her to huff,, and within a couple of days,,, it was like cat hairball's.... Her mucous can be so bad at times she'll look like she's having the dry heave's sometimes,, from it being so thick ...
<br />
<br />The only thing I can tell you is be persistant with talking to your CF Clinic...I know ,, the one here is like pulling teeth sometimes.....
<br />
<br />It is so confusing sometimes if not most of the time ,,,, like,,yes they should cough ,but when is it to much, do they have to have a fever (which I have heard they do not have to have a fever to need anti's),, also if they are not coughing enough and the doctors hear crackles ,,then they need to be treated...I do believe it 's a life time of learning and then when you might learn something it will change....
<br />
<br />It's just so COMPLEX,,,I took that word for granted until dealing with this disease!!!!
<br />I'm sorry you and little Lexi are having to go through all this..Hope someone can give you some better answers..
<br />
<br />Please keep us updated,, I would like to know how she's doing and what the doctors will do.... Karla
 
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