Evaluating when to go to the CF center (a novel)

AbbysMama · Apr 14, 2008

Thank you all. Lots of good information here. She's still asymptomatic/nonsymptomatic so I understand the need to just stay on top of it. I'm not familiar with "tune-ups" so not sure about that either.

Our clinic this past year got a new director. His is the physician following Abby's case. I feel really good about this and we were encouraged in November to get a Vest and we did. We do it twice a day but are not doing any breathing treatments right now.

My heart and soul says...just go. I didn't hear any coughing last night, but this morning she was snotty again and coughy. I can tell she feels miserable. I'm just lucky that she likes her beverages regardless of how she feels. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Keep the feedback coming. I'm learning as I go!!!

AbbysMama · Apr 14, 2008

Thank you all. Lots of good information here. She's still asymptomatic/nonsymptomatic so I understand the need to just stay on top of it. I'm not familiar with "tune-ups" so not sure about that either.

Our clinic this past year got a new director. His is the physician following Abby's case. I feel really good about this and we were encouraged in November to get a Vest and we did. We do it twice a day but are not doing any breathing treatments right now.

My heart and soul says...just go. I didn't hear any coughing last night, but this morning she was snotty again and coughy. I can tell she feels miserable. I'm just lucky that she likes her beverages regardless of how she feels. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Keep the feedback coming. I'm learning as I go!!!

AbbysMama · Apr 14, 2008

Thank you all. Lots of good information here. She's still asymptomatic/nonsymptomatic so I understand the need to just stay on top of it. I'm not familiar with "tune-ups" so not sure about that either.

Our clinic this past year got a new director. His is the physician following Abby's case. I feel really good about this and we were encouraged in November to get a Vest and we did. We do it twice a day but are not doing any breathing treatments right now.

My heart and soul says...just go. I didn't hear any coughing last night, but this morning she was snotty again and coughy. I can tell she feels miserable. I'm just lucky that she likes her beverages regardless of how she feels. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Keep the feedback coming. I'm learning as I go!!!

AbbysMama · Apr 14, 2008

Thank you all. Lots of good information here. She's still asymptomatic/nonsymptomatic so I understand the need to just stay on top of it. I'm not familiar with "tune-ups" so not sure about that either.

Our clinic this past year got a new director. His is the physician following Abby's case. I feel really good about this and we were encouraged in November to get a Vest and we did. We do it twice a day but are not doing any breathing treatments right now.

My heart and soul says...just go. I didn't hear any coughing last night, but this morning she was snotty again and coughy. I can tell she feels miserable. I'm just lucky that she likes her beverages regardless of how she feels. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Keep the feedback coming. I'm learning as I go!!!

AbbysMama · Apr 14, 2008

Thank you all. Lots of good information here. She's still asymptomatic/nonsymptomatic so I understand the need to just stay on top of it. I'm not familiar with "tune-ups" so not sure about that either.
 
 Our clinic this past year got a new director. His is the physician following Abby's case. I feel really good about this and we were encouraged in November to get a Vest and we did. We do it twice a day but are not doing any breathing treatments right now.
 
 My heart and soul says...just go. I didn't hear any coughing last night, but this morning she was snotty again and coughy. I can tell she feels miserable. I'm just lucky that she likes her beverages regardless of how she feels. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Keep the feedback coming. I'm learning as I go!!!

Rebjane · Apr 14, 2008

I just wanted to add that what is best for a CF child is not always what is most convenient, unfortunately. Our CF clinic is 50 miles away. I do most things over the phone, but it has been a process; our pulmo doc getting to know our daughter and me. When Maggie was around 2; she had a cough that would not go away; every time she was off antibiotics her cough kept coming back. Maybe I was not assertive enough; maybe the pulmo thought I was just a worried mom; but I ended up getting a second opinion and Maggie had her first admission for respiratory exacerbation of CF(she was sicker than we had realized). Since that time; we have her on a particular regime that works(knock wood). I feel our pulmo and I are on the same page, now. Again, I think the getting to know your baby, your family, your child's reaction to illness is very important for the CF doc. All CF children are so different. And of course, Maggie has a habit of getting sick at 4pm on Friday evening(when I can't get in touch with anyone who knows her). <img src="i/expressions/face-icon-small-wink.gif" border="0">

Rebjane · Apr 14, 2008

I just wanted to add that what is best for a CF child is not always what is most convenient, unfortunately. Our CF clinic is 50 miles away. I do most things over the phone, but it has been a process; our pulmo doc getting to know our daughter and me. When Maggie was around 2; she had a cough that would not go away; every time she was off antibiotics her cough kept coming back. Maybe I was not assertive enough; maybe the pulmo thought I was just a worried mom; but I ended up getting a second opinion and Maggie had her first admission for respiratory exacerbation of CF(she was sicker than we had realized). Since that time; we have her on a particular regime that works(knock wood). I feel our pulmo and I are on the same page, now. Again, I think the getting to know your baby, your family, your child's reaction to illness is very important for the CF doc. All CF children are so different. And of course, Maggie has a habit of getting sick at 4pm on Friday evening(when I can't get in touch with anyone who knows her). <img src="i/expressions/face-icon-small-wink.gif" border="0">

Rebjane · Apr 14, 2008

I just wanted to add that what is best for a CF child is not always what is most convenient, unfortunately. Our CF clinic is 50 miles away. I do most things over the phone, but it has been a process; our pulmo doc getting to know our daughter and me. When Maggie was around 2; she had a cough that would not go away; every time she was off antibiotics her cough kept coming back. Maybe I was not assertive enough; maybe the pulmo thought I was just a worried mom; but I ended up getting a second opinion and Maggie had her first admission for respiratory exacerbation of CF(she was sicker than we had realized). Since that time; we have her on a particular regime that works(knock wood). I feel our pulmo and I are on the same page, now. Again, I think the getting to know your baby, your family, your child's reaction to illness is very important for the CF doc. All CF children are so different. And of course, Maggie has a habit of getting sick at 4pm on Friday evening(when I can't get in touch with anyone who knows her). <img src="i/expressions/face-icon-small-wink.gif" border="0">

Rebjane · Apr 14, 2008

I just wanted to add that what is best for a CF child is not always what is most convenient, unfortunately. Our CF clinic is 50 miles away. I do most things over the phone, but it has been a process; our pulmo doc getting to know our daughter and me. When Maggie was around 2; she had a cough that would not go away; every time she was off antibiotics her cough kept coming back. Maybe I was not assertive enough; maybe the pulmo thought I was just a worried mom; but I ended up getting a second opinion and Maggie had her first admission for respiratory exacerbation of CF(she was sicker than we had realized). Since that time; we have her on a particular regime that works(knock wood). I feel our pulmo and I are on the same page, now. Again, I think the getting to know your baby, your family, your child's reaction to illness is very important for the CF doc. All CF children are so different. And of course, Maggie has a habit of getting sick at 4pm on Friday evening(when I can't get in touch with anyone who knows her). <img src="i/expressions/face-icon-small-wink.gif" border="0">

Rebjane · Apr 14, 2008

I just wanted to add that what is best for a CF child is not always what is most convenient, unfortunately. Our CF clinic is 50 miles away. I do most things over the phone, but it has been a process; our pulmo doc getting to know our daughter and me. When Maggie was around 2; she had a cough that would not go away; every time she was off antibiotics her cough kept coming back. Maybe I was not assertive enough; maybe the pulmo thought I was just a worried mom; but I ended up getting a second opinion and Maggie had her first admission for respiratory exacerbation of CF(she was sicker than we had realized). Since that time; we have her on a particular regime that works(knock wood). I feel our pulmo and I are on the same page, now. Again, I think the getting to know your baby, your family, your child's reaction to illness is very important for the CF doc. All CF children are so different. And of course, Maggie has a habit of getting sick at 4pm on Friday evening(when I can't get in touch with anyone who knows her). <img src="i/expressions/face-icon-small-wink.gif" border="0">

Ratatosk · Apr 14, 2008

And I guess I'd be a little concerned/cautious with the asymtomatic/no symptoms label. Are your doctors not taking the symptoms seriously because of the mutations she has?

Obviously there's something going on with her that she's not able to get over right now --- guess if I'd been in a simlar position, I'd have called a lot sooner despite being told to wait a week. But that's just me. I'm a worrier <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Apr 14, 2008

And I guess I'd be a little concerned/cautious with the asymtomatic/no symptoms label. Are your doctors not taking the symptoms seriously because of the mutations she has?

Obviously there's something going on with her that she's not able to get over right now --- guess if I'd been in a simlar position, I'd have called a lot sooner despite being told to wait a week. But that's just me. I'm a worrier <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Apr 14, 2008

And I guess I'd be a little concerned/cautious with the asymtomatic/no symptoms label. Are your doctors not taking the symptoms seriously because of the mutations she has?

Obviously there's something going on with her that she's not able to get over right now --- guess if I'd been in a simlar position, I'd have called a lot sooner despite being told to wait a week. But that's just me. I'm a worrier <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Apr 14, 2008

And I guess I'd be a little concerned/cautious with the asymtomatic/no symptoms label. Are your doctors not taking the symptoms seriously because of the mutations she has?

Obviously there's something going on with her that she's not able to get over right now --- guess if I'd been in a simlar position, I'd have called a lot sooner despite being told to wait a week. But that's just me. I'm a worrier <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Apr 14, 2008

And I guess I'd be a little concerned/cautious with the asymtomatic/no symptoms label. Are your doctors not taking the symptoms seriously because of the mutations she has?
 
 Obviously there's something going on with her that she's not able to get over right now --- guess if I'd been in a simlar position, I'd have called a lot sooner despite being told to wait a week. But that's just me. I'm a worrier <img src="i/expressions/face-icon-small-smile.gif" border="0">

AbbysMama · Apr 14, 2008