Weaning off nebs?

[usedtobeinca]

We haven't had much or any success in weaning off nebs. Twice our CF docs have mentioned that Thomas sounded clear and was healthy enough that we could discontinue pulmozyme - but still do cpt and use albuterol. Both times he became sick within a week of that decision (bad colds) and we made the executive decision to put him back on pronto. He sounded clear at his last clinic appt but no suggestion was made to discontinue the nebs that time.

Maybe discontinuing nebs would work better outside the cold/flu season - but we expect that we'll always be integrating it into our routine. That's ok though, its fun together time with our little man.

 

[usedtobeinca]

We haven't had much or any success in weaning off nebs. Twice our CF docs have mentioned that Thomas sounded clear and was healthy enough that we could discontinue pulmozyme - but still do cpt and use albuterol. Both times he became sick within a week of that decision (bad colds) and we made the executive decision to put him back on pronto. He sounded clear at his last clinic appt but no suggestion was made to discontinue the nebs that time.

Maybe discontinuing nebs would work better outside the cold/flu season - but we expect that we'll always be integrating it into our routine. That's ok though, its fun together time with our little man.

 

[debs2girls]

Cheyenne has been on nebbed albuterol since she was a tiny infant, even tho she wasnt diagnosed with cf til she was 5. She will always be on nebbed treatments..she is now on Pulmozyme too..the dr may be adding HTS.


ARGG...she just walked up and layed her head on my arm...she is burning up, again...she is on her third round of antibiotic for pneumonia..we have finally gotten down to 3 treatments (nebs and vest) a day...and two more days of tapering on prelone...we were at the cf clinic on Monday for a recheck and she goes back in two weeks..sometime I can scream...this is so frustrating.

Em, sorry to highjack your post.

 

[debs2girls]

Cheyenne has been on nebbed albuterol since she was a tiny infant, even tho she wasnt diagnosed with cf til she was 5. She will always be on nebbed treatments..she is now on Pulmozyme too..the dr may be adding HTS.


ARGG...she just walked up and layed her head on my arm...she is burning up, again...she is on her third round of antibiotic for pneumonia..we have finally gotten down to 3 treatments (nebs and vest) a day...and two more days of tapering on prelone...we were at the cf clinic on Monday for a recheck and she goes back in two weeks..sometime I can scream...this is so frustrating.

Em, sorry to highjack your post.

 

[debs2girls]

Cheyenne has been on nebbed albuterol since she was a tiny infant, even tho she wasnt diagnosed with cf til she was 5. She will always be on nebbed treatments..she is now on Pulmozyme too..the dr may be adding HTS.


ARGG...she just walked up and layed her head on my arm...she is burning up, again...she is on her third round of antibiotic for pneumonia..we have finally gotten down to 3 treatments (nebs and vest) a day...and two more days of tapering on prelone...we were at the cf clinic on Monday for a recheck and she goes back in two weeks..sometime I can scream...this is so frustrating.

Em, sorry to highjack your post.

 

[lemonstolemonade]

No problem Deb. I totally understand. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Just keep that baby cool and comfortable. It is amazing to me how illnesses keep popping back up over and over and over again ... just when you think it was safe to be normal again...

Anyway, I'm glad to know I'm not alone on the whole weaning thing. Our little toddler/pre-schooler actually put a hand on a hip and stuck her pointer out at me today and told me, "That's not the way I do it, Mama" and walked off. Delightful age (please note scarcasm there). Depending on their mood they want you mind, body and soul at any given moment and then reject you completely the next. It completely amazes me! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She did much better this evening. It just gets hard when she wants me to read to her and Abby's fighting a treatment. I don't want her to learn to tell me "in just a minute" when I need for her to do something like put her dishes in the sink!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ok, enough of that. I'm supposed to be in bed....so I'm off for the night.

Emily

 

[lemonstolemonade]

No problem Deb. I totally understand. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Just keep that baby cool and comfortable. It is amazing to me how illnesses keep popping back up over and over and over again ... just when you think it was safe to be normal again...

Anyway, I'm glad to know I'm not alone on the whole weaning thing. Our little toddler/pre-schooler actually put a hand on a hip and stuck her pointer out at me today and told me, "That's not the way I do it, Mama" and walked off. Delightful age (please note scarcasm there). Depending on their mood they want you mind, body and soul at any given moment and then reject you completely the next. It completely amazes me! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She did much better this evening. It just gets hard when she wants me to read to her and Abby's fighting a treatment. I don't want her to learn to tell me "in just a minute" when I need for her to do something like put her dishes in the sink!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ok, enough of that. I'm supposed to be in bed....so I'm off for the night.

Emily

 

[lemonstolemonade]

No problem Deb. I totally understand. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Just keep that baby cool and comfortable. It is amazing to me how illnesses keep popping back up over and over and over again ... just when you think it was safe to be normal again...

Anyway, I'm glad to know I'm not alone on the whole weaning thing. Our little toddler/pre-schooler actually put a hand on a hip and stuck her pointer out at me today and told me, "That's not the way I do it, Mama" and walked off. Delightful age (please note scarcasm there). Depending on their mood they want you mind, body and soul at any given moment and then reject you completely the next. It completely amazes me! <img src="i/expressions/face-icon-small-smile.gif" border="0"> She did much better this evening. It just gets hard when she wants me to read to her and Abby's fighting a treatment. I don't want her to learn to tell me "in just a minute" when I need for her to do something like put her dishes in the sink!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ok, enough of that. I'm supposed to be in bed....so I'm off for the night.

Emily