Constant email to CF nurse?

[mneville]

Am I the only nuisance parent out there who constantly has to email the CF nurse? She is awesome and gets back to me so quick, often multiple times a day. But I feel like such a pain! Aidan has constant sinus issues and always needs orals so I just email my need for them. Then he started having digestive issues so I email all his poop info. Then I need all new scripts....I just hate that CF is so complicated and chronic. Are other parents out there always contacting CF clinic as well?

He is about to have 5th sinus surgery and his 4th PICC so we have alot of communication going on about that.

Megan

 

[mneville]

Am I the only nuisance parent out there who constantly has to email the CF nurse? She is awesome and gets back to me so quick, often multiple times a day. But I feel like such a pain! Aidan has constant sinus issues and always needs orals so I just email my need for them. Then he started having digestive issues so I email all his poop info. Then I need all new scripts....I just hate that CF is so complicated and chronic. Are other parents out there always contacting CF clinic as well?

He is about to have 5th sinus surgery and his 4th PICC so we have alot of communication going on about that.

Megan

 

[mneville]

Am I the only nuisance parent out there who constantly has to email the CF nurse? She is awesome and gets back to me so quick, often multiple times a day. But I feel like such a pain! Aidan has constant sinus issues and always needs orals so I just email my need for them. Then he started having digestive issues so I email all his poop info. Then I need all new scripts....I just hate that CF is so complicated and chronic. Are other parents out there always contacting CF clinic as well?

He is about to have 5th sinus surgery and his 4th PICC so we have alot of communication going on about that.

Megan

 

[mneville]

Am I the only nuisance parent out there who constantly has to email the CF nurse? She is awesome and gets back to me so quick, often multiple times a day. But I feel like such a pain! Aidan has constant sinus issues and always needs orals so I just email my need for them. Then he started having digestive issues so I email all his poop info. Then I need all new scripts....I just hate that CF is so complicated and chronic. Are other parents out there always contacting CF clinic as well?

He is about to have 5th sinus surgery and his 4th PICC so we have alot of communication going on about that.

Megan

 

[mneville]

Am I the only nuisance parent out there who constantly has to email the CF nurse? She is awesome and gets back to me so quick, often multiple times a day. But I feel like such a pain! Aidan has constant sinus issues and always needs orals so I just email my need for them. Then he started having digestive issues so I email all his poop info. Then I need all new scripts....I just hate that CF is so complicated and chronic. Are other parents out there always contacting CF clinic as well?
<br />
<br />He is about to have 5th sinus surgery and his 4th PICC so we have alot of communication going on about that.
<br />
<br />Megan

 

[Mommafirst]

I talk with someone from the center practically every week. I email with the social worker and doctors, call and chat with the CF nurse, etc. You aren't alone. I'm thankful that they are still willing to accept a call from me.

 

[Mommafirst]

I talk with someone from the center practically every week. I email with the social worker and doctors, call and chat with the CF nurse, etc. You aren't alone. I'm thankful that they are still willing to accept a call from me.

 

[Mommafirst]

I talk with someone from the center practically every week. I email with the social worker and doctors, call and chat with the CF nurse, etc. You aren't alone. I'm thankful that they are still willing to accept a call from me.

 

[Mommafirst]

I talk with someone from the center practically every week. I email with the social worker and doctors, call and chat with the CF nurse, etc. You aren't alone. I'm thankful that they are still willing to accept a call from me.

 

[Mommafirst]

I talk with someone from the center practically every week. I email with the social worker and doctors, call and chat with the CF nurse, etc. You aren't alone. I'm thankful that they are still willing to accept a call from me.

 

[hmw]

I always call Emily's center before the ped. when she gets sick... just because they are so much better equipped to be able to deal with it vs. the ped. And then if they want me to call the ped, fine- but at least I'll have gotten their input first. They don't seem to have a problem with this and it tends to happen a couple times between her regular visits (which had been every two months; now monthly.) I am also MUCH more comfortable with them being the one to rx abx for her- they know what will work for her, so if I worried she was sick enough to need abx for something they would be who I'd want to talk to, as well.

Something that might help... I make a note of the original prescribing date & how many refills she has left for all of her CF meds so they can give us as many new scripts as we need while we are there. (I need to note the original rx date since our insurance requires a new one every 6 months even if we still have refills left.) It only takes 5min & they do really appreciate it when I remember to do that. It makes my life easier as well to not have to worry about suddenly running out of things. They do sometimes have to adjust her enzyme script inbetween visits (which will then require faxing the change in dose to the school every time since the school can't just take my word for it- sigh) but having all her maintainance meds taken care of helps a lot.

We've also dealt with incessant digestive & weight gain issues of late. I'm so sorry Aidan has been dealing with that too! We had to keep a Poop Log (along with a food diary to go with it) for a month at one point & we are still keeping close watch. At least we were able to chart it and not give a continual report. Asking if you can log what's going on for a certain number of days at a time before sending it might help though, if you really feel uncomfortable with this! I'm sure she'll appreciate knowing you are trying to work with her and not wanting to feel like a pain- at the least she'll be able to tell you, NO, I need to hear from you this often due to what is going on, and you'll feel better about it. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope his upcoming surgery goes well. How is Aidan feeling about it? I know you had posted a while back he was having a pretty difficult time with this one.

 

[hmw]

I always call Emily's center before the ped. when she gets sick... just because they are so much better equipped to be able to deal with it vs. the ped. And then if they want me to call the ped, fine- but at least I'll have gotten their input first. They don't seem to have a problem with this and it tends to happen a couple times between her regular visits (which had been every two months; now monthly.) I am also MUCH more comfortable with them being the one to rx abx for her- they know what will work for her, so if I worried she was sick enough to need abx for something they would be who I'd want to talk to, as well.

Something that might help... I make a note of the original prescribing date & how many refills she has left for all of her CF meds so they can give us as many new scripts as we need while we are there. (I need to note the original rx date since our insurance requires a new one every 6 months even if we still have refills left.) It only takes 5min & they do really appreciate it when I remember to do that. It makes my life easier as well to not have to worry about suddenly running out of things. They do sometimes have to adjust her enzyme script inbetween visits (which will then require faxing the change in dose to the school every time since the school can't just take my word for it- sigh) but having all her maintainance meds taken care of helps a lot.

We've also dealt with incessant digestive & weight gain issues of late. I'm so sorry Aidan has been dealing with that too! We had to keep a Poop Log (along with a food diary to go with it) for a month at one point & we are still keeping close watch. At least we were able to chart it and not give a continual report. Asking if you can log what's going on for a certain number of days at a time before sending it might help though, if you really feel uncomfortable with this! I'm sure she'll appreciate knowing you are trying to work with her and not wanting to feel like a pain- at the least she'll be able to tell you, NO, I need to hear from you this often due to what is going on, and you'll feel better about it. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope his upcoming surgery goes well. How is Aidan feeling about it? I know you had posted a while back he was having a pretty difficult time with this one.

 

[hmw]

I always call Emily's center before the ped. when she gets sick... just because they are so much better equipped to be able to deal with it vs. the ped. And then if they want me to call the ped, fine- but at least I'll have gotten their input first. They don't seem to have a problem with this and it tends to happen a couple times between her regular visits (which had been every two months; now monthly.) I am also MUCH more comfortable with them being the one to rx abx for her- they know what will work for her, so if I worried she was sick enough to need abx for something they would be who I'd want to talk to, as well.

Something that might help... I make a note of the original prescribing date & how many refills she has left for all of her CF meds so they can give us as many new scripts as we need while we are there. (I need to note the original rx date since our insurance requires a new one every 6 months even if we still have refills left.) It only takes 5min & they do really appreciate it when I remember to do that. It makes my life easier as well to not have to worry about suddenly running out of things. They do sometimes have to adjust her enzyme script inbetween visits (which will then require faxing the change in dose to the school every time since the school can't just take my word for it- sigh) but having all her maintainance meds taken care of helps a lot.

We've also dealt with incessant digestive & weight gain issues of late. I'm so sorry Aidan has been dealing with that too! We had to keep a Poop Log (along with a food diary to go with it) for a month at one point & we are still keeping close watch. At least we were able to chart it and not give a continual report. Asking if you can log what's going on for a certain number of days at a time before sending it might help though, if you really feel uncomfortable with this! I'm sure she'll appreciate knowing you are trying to work with her and not wanting to feel like a pain- at the least she'll be able to tell you, NO, I need to hear from you this often due to what is going on, and you'll feel better about it. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope his upcoming surgery goes well. How is Aidan feeling about it? I know you had posted a while back he was having a pretty difficult time with this one.

 

[hmw]

I always call Emily's center before the ped. when she gets sick... just because they are so much better equipped to be able to deal with it vs. the ped. And then if they want me to call the ped, fine- but at least I'll have gotten their input first. They don't seem to have a problem with this and it tends to happen a couple times between her regular visits (which had been every two months; now monthly.) I am also MUCH more comfortable with them being the one to rx abx for her- they know what will work for her, so if I worried she was sick enough to need abx for something they would be who I'd want to talk to, as well.

Something that might help... I make a note of the original prescribing date & how many refills she has left for all of her CF meds so they can give us as many new scripts as we need while we are there. (I need to note the original rx date since our insurance requires a new one every 6 months even if we still have refills left.) It only takes 5min & they do really appreciate it when I remember to do that. It makes my life easier as well to not have to worry about suddenly running out of things. They do sometimes have to adjust her enzyme script inbetween visits (which will then require faxing the change in dose to the school every time since the school can't just take my word for it- sigh) but having all her maintainance meds taken care of helps a lot.

We've also dealt with incessant digestive & weight gain issues of late. I'm so sorry Aidan has been dealing with that too! We had to keep a Poop Log (along with a food diary to go with it) for a month at one point & we are still keeping close watch. At least we were able to chart it and not give a continual report. Asking if you can log what's going on for a certain number of days at a time before sending it might help though, if you really feel uncomfortable with this! I'm sure she'll appreciate knowing you are trying to work with her and not wanting to feel like a pain- at the least she'll be able to tell you, NO, I need to hear from you this often due to what is going on, and you'll feel better about it. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope his upcoming surgery goes well. How is Aidan feeling about it? I know you had posted a while back he was having a pretty difficult time with this one.

 

[hmw]

I always call Emily's center before the ped. when she gets sick... just because they are so much better equipped to be able to deal with it vs. the ped. And then if they want me to call the ped, fine- but at least I'll have gotten their input first. They don't seem to have a problem with this and it tends to happen a couple times between her regular visits (which had been every two months; now monthly.) I am also MUCH more comfortable with them being the one to rx abx for her- they know what will work for her, so if I worried she was sick enough to need abx for something they would be who I'd want to talk to, as well.
<br />
<br />Something that might help... I make a note of the original prescribing date & how many refills she has left for all of her CF meds so they can give us as many new scripts as we need while we are there. (I need to note the original rx date since our insurance requires a new one every 6 months even if we still have refills left.) It only takes 5min & they do really appreciate it when I remember to do that. It makes my life easier as well to not have to worry about suddenly running out of things. They do sometimes have to adjust her enzyme script inbetween visits (which will then require faxing the change in dose to the school every time since the school can't just take my word for it- sigh) but having all her maintainance meds taken care of helps a lot.
<br />
<br />We've also dealt with incessant digestive & weight gain issues of late. I'm so sorry Aidan has been dealing with that too! We had to keep a Poop Log (along with a food diary to go with it) for a month at one point & we are still keeping close watch. At least we were able to chart it and not give a continual report. Asking if you can log what's going on for a certain number of days at a time before sending it might help though, if you really feel uncomfortable with this! I'm sure she'll appreciate knowing you are trying to work with her and not wanting to feel like a pain- at the least she'll be able to tell you, NO, I need to hear from you this often due to what is going on, and you'll feel better about it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I hope his upcoming surgery goes well. How is Aidan feeling about it? I know you had posted a while back he was having a pretty difficult time with this one.

 

[theLostMiler]

I am constantly on the phone (sometimes email) with my CF nurse too. Even when not "sick" we keep in touch at least quick phone call over the phone at least once every 2 weeks. When sick, we talk upwards of 3 times a week. A lot of prescription issues, and general how I am feeling... whether I am getting fevers, appetite, nausea etc.

I love my nurse and I have told her that.

 

[theLostMiler]

I am constantly on the phone (sometimes email) with my CF nurse too. Even when not "sick" we keep in touch at least quick phone call over the phone at least once every 2 weeks. When sick, we talk upwards of 3 times a week. A lot of prescription issues, and general how I am feeling... whether I am getting fevers, appetite, nausea etc.

I love my nurse and I have told her that.

 

[theLostMiler]

I am constantly on the phone (sometimes email) with my CF nurse too. Even when not "sick" we keep in touch at least quick phone call over the phone at least once every 2 weeks. When sick, we talk upwards of 3 times a week. A lot of prescription issues, and general how I am feeling... whether I am getting fevers, appetite, nausea etc.

I love my nurse and I have told her that.

 

[theLostMiler]

I am constantly on the phone (sometimes email) with my CF nurse too. Even when not "sick" we keep in touch at least quick phone call over the phone at least once every 2 weeks. When sick, we talk upwards of 3 times a week. A lot of prescription issues, and general how I am feeling... whether I am getting fevers, appetite, nausea etc.

I love my nurse and I have told her that.

 

[theLostMiler]

I am constantly on the phone (sometimes email) with my CF nurse too. Even when not "sick" we keep in touch at least quick phone call over the phone at least once every 2 weeks. When sick, we talk upwards of 3 times a week. A lot of prescription issues, and general how I am feeling... whether I am getting fevers, appetite, nausea etc.
<br />
<br />I love my nurse and I have told her that.
<br />
<br />