Can you tell I'm new to this?

[Mommafirst]

A CF diagnosis is overwhelming, so if you have questions, by all means ask them!!! There are so many things you forget to ask at the craziness of CF clinic -- especially in the beginning. Ask away, but do remember that we are all just parents or CF patients and while that gives us tons of "been there done that" credibility, this is just and internet forum. Don't mistake anyone's opinion for unquestioned fact -- always check with your CF doctor for their professional opinion as well.

If your daughter is coughing and wheezing, I'd definitely put a call in to the CF center. Our center doesn't like to have my daughter coughing for more than a few days and then they put her on some antibiotic. The more mucus they produce, the better the environment for bacterial growth of the CF typical bacterias in their lungs, causing more problems. So a normal cold can create an ideal situation for a CF pulmonary exacerbation.

As for marriage stuff -- its not easy. I think since you are in the early stages it would be advisable to have heart to heart with your husband about the big picture: how you want to handle things you can control, how you are going to manage treatments, etc. The more you can provide a united front between you the easier it will be on the marriage. It took a much longer time for my husband to come out of his denial over this disease. When we were in different places over it all, it was much harder on our relationship. Once we were able to converge a bit, things definitely picked up.

 

[Mommafirst]

A CF diagnosis is overwhelming, so if you have questions, by all means ask them!!! There are so many things you forget to ask at the craziness of CF clinic -- especially in the beginning. Ask away, but do remember that we are all just parents or CF patients and while that gives us tons of "been there done that" credibility, this is just and internet forum. Don't mistake anyone's opinion for unquestioned fact -- always check with your CF doctor for their professional opinion as well.

If your daughter is coughing and wheezing, I'd definitely put a call in to the CF center. Our center doesn't like to have my daughter coughing for more than a few days and then they put her on some antibiotic. The more mucus they produce, the better the environment for bacterial growth of the CF typical bacterias in their lungs, causing more problems. So a normal cold can create an ideal situation for a CF pulmonary exacerbation.

As for marriage stuff -- its not easy. I think since you are in the early stages it would be advisable to have heart to heart with your husband about the big picture: how you want to handle things you can control, how you are going to manage treatments, etc. The more you can provide a united front between you the easier it will be on the marriage. It took a much longer time for my husband to come out of his denial over this disease. When we were in different places over it all, it was much harder on our relationship. Once we were able to converge a bit, things definitely picked up.

 

[Mommafirst]

A CF diagnosis is overwhelming, so if you have questions, by all means ask them!!! There are so many things you forget to ask at the craziness of CF clinic -- especially in the beginning. Ask away, but do remember that we are all just parents or CF patients and while that gives us tons of "been there done that" credibility, this is just and internet forum. Don't mistake anyone's opinion for unquestioned fact -- always check with your CF doctor for their professional opinion as well.

If your daughter is coughing and wheezing, I'd definitely put a call in to the CF center. Our center doesn't like to have my daughter coughing for more than a few days and then they put her on some antibiotic. The more mucus they produce, the better the environment for bacterial growth of the CF typical bacterias in their lungs, causing more problems. So a normal cold can create an ideal situation for a CF pulmonary exacerbation.

As for marriage stuff -- its not easy. I think since you are in the early stages it would be advisable to have heart to heart with your husband about the big picture: how you want to handle things you can control, how you are going to manage treatments, etc. The more you can provide a united front between you the easier it will be on the marriage. It took a much longer time for my husband to come out of his denial over this disease. When we were in different places over it all, it was much harder on our relationship. Once we were able to converge a bit, things definitely picked up.

 

[Mommafirst]

A CF diagnosis is overwhelming, so if you have questions, by all means ask them!!! There are so many things you forget to ask at the craziness of CF clinic -- especially in the beginning. Ask away, but do remember that we are all just parents or CF patients and while that gives us tons of "been there done that" credibility, this is just and internet forum. Don't mistake anyone's opinion for unquestioned fact -- always check with your CF doctor for their professional opinion as well.

If your daughter is coughing and wheezing, I'd definitely put a call in to the CF center. Our center doesn't like to have my daughter coughing for more than a few days and then they put her on some antibiotic. The more mucus they produce, the better the environment for bacterial growth of the CF typical bacterias in their lungs, causing more problems. So a normal cold can create an ideal situation for a CF pulmonary exacerbation.

As for marriage stuff -- its not easy. I think since you are in the early stages it would be advisable to have heart to heart with your husband about the big picture: how you want to handle things you can control, how you are going to manage treatments, etc. The more you can provide a united front between you the easier it will be on the marriage. It took a much longer time for my husband to come out of his denial over this disease. When we were in different places over it all, it was much harder on our relationship. Once we were able to converge a bit, things definitely picked up.

 

[Mommafirst]

A CF diagnosis is overwhelming, so if you have questions, by all means ask them!!! There are so many things you forget to ask at the craziness of CF clinic -- especially in the beginning. Ask away, but do remember that we are all just parents or CF patients and while that gives us tons of "been there done that" credibility, this is just and internet forum. Don't mistake anyone's opinion for unquestioned fact -- always check with your CF doctor for their professional opinion as well.
<br />
<br />If your daughter is coughing and wheezing, I'd definitely put a call in to the CF center. Our center doesn't like to have my daughter coughing for more than a few days and then they put her on some antibiotic. The more mucus they produce, the better the environment for bacterial growth of the CF typical bacterias in their lungs, causing more problems. So a normal cold can create an ideal situation for a CF pulmonary exacerbation.
<br />
<br />As for marriage stuff -- its not easy. I think since you are in the early stages it would be advisable to have heart to heart with your husband about the big picture: how you want to handle things you can control, how you are going to manage treatments, etc. The more you can provide a united front between you the easier it will be on the marriage. It took a much longer time for my husband to come out of his denial over this disease. When we were in different places over it all, it was much harder on our relationship. Once we were able to converge a bit, things definitely picked up.

 

[Ratatosk]

When they're teeny tiny babies -- even non-cfers, one needs to be a bit more cautious. Make sure people wash their hands before they handle her, try to avoid sick people. Our first year, was probably the worst and earlies flu season ever and we had to wait two months into it before we could get DS his flu shot at 6 months. Our doctor also prescribed monthly synagis shots to help prevent RSV during the cold and flu season.

When DS did get a cough or a wheeze, we did call his doctor, who sometimes would prescribe something, but would also stress to "beat that cough out of him". So we'd increase CPT and neb treatments from 3 to 4 or even 5 per day. Or sometimes, I'd just give him little mini-cpt treatments while holding him.

With clinic appointments the two of us would go together and we'd bring a list of questions and a notebook, so we wouldn't get off track or get distracted.

In terms of marriage, DH and I try to make sure we're on the same page in terms of DS' health -- the importance of maintaining a routine in terms of cpt treatments and medications. I'm more of a worrier. One thing we had to do early on was deal with his relatives in terms of sick people coming to holiday events or people smoking. More than once we were told "it was just a cold" only to find out someone had bronchitis or pneumonia. One of his relatives was afraid to tell us for fear we wouldn't show up. We needed to be a united front in terms of dealing with those types of issues and stress that we might have to stop attending events if this became an often occurence.

Also, easier said than done, but try to have a normal life, do normal things as a family or as a couple. We go on vacations, weekend trips, attend local events, visit relatives, make sure DS is active and enrolled in extra-curricular sports activities.

 

[Ratatosk]

When they're teeny tiny babies -- even non-cfers, one needs to be a bit more cautious. Make sure people wash their hands before they handle her, try to avoid sick people. Our first year, was probably the worst and earlies flu season ever and we had to wait two months into it before we could get DS his flu shot at 6 months. Our doctor also prescribed monthly synagis shots to help prevent RSV during the cold and flu season.

When DS did get a cough or a wheeze, we did call his doctor, who sometimes would prescribe something, but would also stress to "beat that cough out of him". So we'd increase CPT and neb treatments from 3 to 4 or even 5 per day. Or sometimes, I'd just give him little mini-cpt treatments while holding him.

With clinic appointments the two of us would go together and we'd bring a list of questions and a notebook, so we wouldn't get off track or get distracted.

In terms of marriage, DH and I try to make sure we're on the same page in terms of DS' health -- the importance of maintaining a routine in terms of cpt treatments and medications. I'm more of a worrier. One thing we had to do early on was deal with his relatives in terms of sick people coming to holiday events or people smoking. More than once we were told "it was just a cold" only to find out someone had bronchitis or pneumonia. One of his relatives was afraid to tell us for fear we wouldn't show up. We needed to be a united front in terms of dealing with those types of issues and stress that we might have to stop attending events if this became an often occurence.

Also, easier said than done, but try to have a normal life, do normal things as a family or as a couple. We go on vacations, weekend trips, attend local events, visit relatives, make sure DS is active and enrolled in extra-curricular sports activities.

 

[Ratatosk]

When they're teeny tiny babies -- even non-cfers, one needs to be a bit more cautious. Make sure people wash their hands before they handle her, try to avoid sick people. Our first year, was probably the worst and earlies flu season ever and we had to wait two months into it before we could get DS his flu shot at 6 months. Our doctor also prescribed monthly synagis shots to help prevent RSV during the cold and flu season.

When DS did get a cough or a wheeze, we did call his doctor, who sometimes would prescribe something, but would also stress to "beat that cough out of him". So we'd increase CPT and neb treatments from 3 to 4 or even 5 per day. Or sometimes, I'd just give him little mini-cpt treatments while holding him.

With clinic appointments the two of us would go together and we'd bring a list of questions and a notebook, so we wouldn't get off track or get distracted.

In terms of marriage, DH and I try to make sure we're on the same page in terms of DS' health -- the importance of maintaining a routine in terms of cpt treatments and medications. I'm more of a worrier. One thing we had to do early on was deal with his relatives in terms of sick people coming to holiday events or people smoking. More than once we were told "it was just a cold" only to find out someone had bronchitis or pneumonia. One of his relatives was afraid to tell us for fear we wouldn't show up. We needed to be a united front in terms of dealing with those types of issues and stress that we might have to stop attending events if this became an often occurence.

Also, easier said than done, but try to have a normal life, do normal things as a family or as a couple. We go on vacations, weekend trips, attend local events, visit relatives, make sure DS is active and enrolled in extra-curricular sports activities.

 

[Ratatosk]

When they're teeny tiny babies -- even non-cfers, one needs to be a bit more cautious. Make sure people wash their hands before they handle her, try to avoid sick people. Our first year, was probably the worst and earlies flu season ever and we had to wait two months into it before we could get DS his flu shot at 6 months. Our doctor also prescribed monthly synagis shots to help prevent RSV during the cold and flu season.

When DS did get a cough or a wheeze, we did call his doctor, who sometimes would prescribe something, but would also stress to "beat that cough out of him". So we'd increase CPT and neb treatments from 3 to 4 or even 5 per day. Or sometimes, I'd just give him little mini-cpt treatments while holding him.

With clinic appointments the two of us would go together and we'd bring a list of questions and a notebook, so we wouldn't get off track or get distracted.

In terms of marriage, DH and I try to make sure we're on the same page in terms of DS' health -- the importance of maintaining a routine in terms of cpt treatments and medications. I'm more of a worrier. One thing we had to do early on was deal with his relatives in terms of sick people coming to holiday events or people smoking. More than once we were told "it was just a cold" only to find out someone had bronchitis or pneumonia. One of his relatives was afraid to tell us for fear we wouldn't show up. We needed to be a united front in terms of dealing with those types of issues and stress that we might have to stop attending events if this became an often occurence.

Also, easier said than done, but try to have a normal life, do normal things as a family or as a couple. We go on vacations, weekend trips, attend local events, visit relatives, make sure DS is active and enrolled in extra-curricular sports activities.

 

[Ratatosk]

When they're teeny tiny babies -- even non-cfers, one needs to be a bit more cautious. Make sure people wash their hands before they handle her, try to avoid sick people. Our first year, was probably the worst and earlies flu season ever and we had to wait two months into it before we could get DS his flu shot at 6 months. Our doctor also prescribed monthly synagis shots to help prevent RSV during the cold and flu season.
<br />
<br />When DS did get a cough or a wheeze, we did call his doctor, who sometimes would prescribe something, but would also stress to "beat that cough out of him". So we'd increase CPT and neb treatments from 3 to 4 or even 5 per day. Or sometimes, I'd just give him little mini-cpt treatments while holding him.
<br />
<br />With clinic appointments the two of us would go together and we'd bring a list of questions and a notebook, so we wouldn't get off track or get distracted.
<br />
<br />In terms of marriage, DH and I try to make sure we're on the same page in terms of DS' health -- the importance of maintaining a routine in terms of cpt treatments and medications. I'm more of a worrier. One thing we had to do early on was deal with his relatives in terms of sick people coming to holiday events or people smoking. More than once we were told "it was just a cold" only to find out someone had bronchitis or pneumonia. One of his relatives was afraid to tell us for fear we wouldn't show up. We needed to be a united front in terms of dealing with those types of issues and stress that we might have to stop attending events if this became an often occurence.
<br />
<br />Also, easier said than done, but try to have a normal life, do normal things as a family or as a couple. We go on vacations, weekend trips, attend local events, visit relatives, make sure DS is active and enrolled in extra-curricular sports activities.

 

[Ratatosk]

As far as swine flu... Proper hand washing is a biggy. If your child is in daycare, having a provider or caregiver who lets you know if something is going around with the other kids. Or with your other child's friends.

We also have a back up script for tamiflu, just in case. And a few years ago, DS' doctor put me and my husband on it because a colleague showed up to our offices with influenza A. Bleah!

 

[Ratatosk]

As far as swine flu... Proper hand washing is a biggy. If your child is in daycare, having a provider or caregiver who lets you know if something is going around with the other kids. Or with your other child's friends.

We also have a back up script for tamiflu, just in case. And a few years ago, DS' doctor put me and my husband on it because a colleague showed up to our offices with influenza A. Bleah!

 

[Ratatosk]

As far as swine flu... Proper hand washing is a biggy. If your child is in daycare, having a provider or caregiver who lets you know if something is going around with the other kids. Or with your other child's friends.

We also have a back up script for tamiflu, just in case. And a few years ago, DS' doctor put me and my husband on it because a colleague showed up to our offices with influenza A. Bleah!

 

[Ratatosk]

As far as swine flu... Proper hand washing is a biggy. If your child is in daycare, having a provider or caregiver who lets you know if something is going around with the other kids. Or with your other child's friends.

We also have a back up script for tamiflu, just in case. And a few years ago, DS' doctor put me and my husband on it because a colleague showed up to our offices with influenza A. Bleah!

 

[Ratatosk]

As far as swine flu... Proper hand washing is a biggy. If your child is in daycare, having a provider or caregiver who lets you know if something is going around with the other kids. Or with your other child's friends.
<br />
<br />We also have a back up script for tamiflu, just in case. And a few years ago, DS' doctor put me and my husband on it because a colleague showed up to our offices with influenza A. Bleah!

 

[AidensMama]

First of all... definitely ask questions~ it's the only way to keep your sanity at times! Or so I've found...

As for the coughing and wheezing... I agree with the other posters in saying~ check with your CF clinic. They will understand that you have questions that come up outside of your clinic visit and they also know that you're new to this and getting used to your new "normal". Call them up, I'm sure there's either a nurse on duty to answer your call or a machine where you can leave a message and wait for a call-back. Our clinic has the latter in non-emergency situations and we usually hear back from them within 24 hours. It's very handy. We all have questions in the beginning becuase it's still unknown... and even when you're used to things, you'll come up with questions. It's OK! <img src="i/expressions/face-icon-small-smile.gif" border="0">

As far as the marriage thing... it was harder for my husband and I in the beginning... marriages can be tricky sometimes and when you add in a fresh coating of STRESS or ILLNESS, it only makes it harder. But it's temporary. You will adjust to everything and hopefully your challenges will bring you closer! Just remember to take time for yourselves. You are still husband and wife, and still in love, and need to focus on each other outside of children and CF. Spend a little time each week remembering why you fell in love... <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[AidensMama]

First of all... definitely ask questions~ it's the only way to keep your sanity at times! Or so I've found...

As for the coughing and wheezing... I agree with the other posters in saying~ check with your CF clinic. They will understand that you have questions that come up outside of your clinic visit and they also know that you're new to this and getting used to your new "normal". Call them up, I'm sure there's either a nurse on duty to answer your call or a machine where you can leave a message and wait for a call-back. Our clinic has the latter in non-emergency situations and we usually hear back from them within 24 hours. It's very handy. We all have questions in the beginning becuase it's still unknown... and even when you're used to things, you'll come up with questions. It's OK! <img src="i/expressions/face-icon-small-smile.gif" border="0">

As far as the marriage thing... it was harder for my husband and I in the beginning... marriages can be tricky sometimes and when you add in a fresh coating of STRESS or ILLNESS, it only makes it harder. But it's temporary. You will adjust to everything and hopefully your challenges will bring you closer! Just remember to take time for yourselves. You are still husband and wife, and still in love, and need to focus on each other outside of children and CF. Spend a little time each week remembering why you fell in love... <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[AidensMama]

First of all... definitely ask questions~ it's the only way to keep your sanity at times! Or so I've found...

As for the coughing and wheezing... I agree with the other posters in saying~ check with your CF clinic. They will understand that you have questions that come up outside of your clinic visit and they also know that you're new to this and getting used to your new "normal". Call them up, I'm sure there's either a nurse on duty to answer your call or a machine where you can leave a message and wait for a call-back. Our clinic has the latter in non-emergency situations and we usually hear back from them within 24 hours. It's very handy. We all have questions in the beginning becuase it's still unknown... and even when you're used to things, you'll come up with questions. It's OK! <img src="i/expressions/face-icon-small-smile.gif" border="0">

As far as the marriage thing... it was harder for my husband and I in the beginning... marriages can be tricky sometimes and when you add in a fresh coating of STRESS or ILLNESS, it only makes it harder. But it's temporary. You will adjust to everything and hopefully your challenges will bring you closer! Just remember to take time for yourselves. You are still husband and wife, and still in love, and need to focus on each other outside of children and CF. Spend a little time each week remembering why you fell in love... <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[AidensMama]

First of all... definitely ask questions~ it's the only way to keep your sanity at times! Or so I've found...

As for the coughing and wheezing... I agree with the other posters in saying~ check with your CF clinic. They will understand that you have questions that come up outside of your clinic visit and they also know that you're new to this and getting used to your new "normal". Call them up, I'm sure there's either a nurse on duty to answer your call or a machine where you can leave a message and wait for a call-back. Our clinic has the latter in non-emergency situations and we usually hear back from them within 24 hours. It's very handy. We all have questions in the beginning becuase it's still unknown... and even when you're used to things, you'll come up with questions. It's OK! <img src="i/expressions/face-icon-small-smile.gif" border="0">

As far as the marriage thing... it was harder for my husband and I in the beginning... marriages can be tricky sometimes and when you add in a fresh coating of STRESS or ILLNESS, it only makes it harder. But it's temporary. You will adjust to everything and hopefully your challenges will bring you closer! Just remember to take time for yourselves. You are still husband and wife, and still in love, and need to focus on each other outside of children and CF. Spend a little time each week remembering why you fell in love... <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[AidensMama]

First of all... definitely ask questions~ it's the only way to keep your sanity at times! Or so I've found...
<br />
<br />As for the coughing and wheezing... I agree with the other posters in saying~ check with your CF clinic. They will understand that you have questions that come up outside of your clinic visit and they also know that you're new to this and getting used to your new "normal". Call them up, I'm sure there's either a nurse on duty to answer your call or a machine where you can leave a message and wait for a call-back. Our clinic has the latter in non-emergency situations and we usually hear back from them within 24 hours. It's very handy. We all have questions in the beginning becuase it's still unknown... and even when you're used to things, you'll come up with questions. It's OK! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />As far as the marriage thing... it was harder for my husband and I in the beginning... marriages can be tricky sometimes and when you add in a fresh coating of STRESS or ILLNESS, it only makes it harder. But it's temporary. You will adjust to everything and hopefully your challenges will bring you closer! Just remember to take time for yourselves. You are still husband and wife, and still in love, and need to focus on each other outside of children and CF. Spend a little time each week remembering why you fell in love... <img src="i/expressions/face-icon-small-smile.gif" border="0">