Am I doing things right?

[crook6789]

I am a stay at home mom to 3 great kids. My oldest who is about to turn 11, my daughter who is 7 and my little guy who is 3. MY oldest and my little guy both have CF. My daughter is not even a carrier. Kayin the 11 year old is not very severe. He is on meds and the vest. He was just scoped with a bravo and he has severe reflux and esophigitis. I am sure they are going to try and convince me to do the nissen fundoplication on him. I am not sure if it is a good decision at his age. My little guy Karsen is very severe. We have been unable to find either one of the boys second gene. They are both DF508 with the other gene unknown. Sweat numbers have been all over the place. Kayin is usually 39 or 41 and Karsen is 41 or 42. Depends on where and when the tests were taken. Both of the boys had the nasal differential test and were positive for polyps and what ever else it showed. Kayin had sinus surgery with a T&A at the age of 4 and has had numerous sinus infections since. His latest CT showed sinus disease but not severe any more. I am not sure how that could happen but it did. Karsen just has a sinus CT done and the ENT said he is very worried about him because he has not seen a sinus CT look that bad in a 3y/o with CF in a while. He is scheduled to have sinus surgery in July. With both boys possibly facing surgery I just don't know if I can do it alone. My husband is currently in Iraq. One of the surgeries would be in one town and the other would be an hour away at the children's hospital. I can not be in two places at once. When my husband comes home he will go before the medical evaluation board to be medically discharged from the military. He was injured in a helicopter crash and broke his back. When he returns home and this process starts we will no longer have insurance until my boys come off of the medicaid waiver waiting list. I just don't know how to be in 2 places at one time. Both kids need the surgeries. If I don't have them done soon they may not get them done for a very long time and could get worse. If I do have them done how do I choose which one is more important and which one to do first?

And when Karsen has his surgery done for sinus how is he still able to have his o2 on because it goes in his nose. Wouldn't it dry out his incision and make it hurt worse? He is only 3 and has had more surgeries than I have fingers on one hand before he was 1. He was diagnosed with CFRD at the age of 2. None of his docs have seen any one so young have this. He has been on an insulin pump since January. He has been on continous O2 since he was 4 months old. He had a nissen fundoplication done at 6 months old and had a g tube placed. He had it removed and then 9 months later had to have it put back in because he was failure to thrive at 3% on the growth chart. Is there anyone else on here who has a litle on on the O's. I feel so alone in all of this because I know no one who has a kiddo with CF with as many problems as my 3 year old at the age of 3. most of the kids with CF don't develop the same problems till much older. I really question myself and think that I am doing things wrong.....

Shannon

 

[crook6789]

I am a stay at home mom to 3 great kids. My oldest who is about to turn 11, my daughter who is 7 and my little guy who is 3. MY oldest and my little guy both have CF. My daughter is not even a carrier. Kayin the 11 year old is not very severe. He is on meds and the vest. He was just scoped with a bravo and he has severe reflux and esophigitis. I am sure they are going to try and convince me to do the nissen fundoplication on him. I am not sure if it is a good decision at his age. My little guy Karsen is very severe. We have been unable to find either one of the boys second gene. They are both DF508 with the other gene unknown. Sweat numbers have been all over the place. Kayin is usually 39 or 41 and Karsen is 41 or 42. Depends on where and when the tests were taken. Both of the boys had the nasal differential test and were positive for polyps and what ever else it showed. Kayin had sinus surgery with a T&A at the age of 4 and has had numerous sinus infections since. His latest CT showed sinus disease but not severe any more. I am not sure how that could happen but it did. Karsen just has a sinus CT done and the ENT said he is very worried about him because he has not seen a sinus CT look that bad in a 3y/o with CF in a while. He is scheduled to have sinus surgery in July. With both boys possibly facing surgery I just don't know if I can do it alone. My husband is currently in Iraq. One of the surgeries would be in one town and the other would be an hour away at the children's hospital. I can not be in two places at once. When my husband comes home he will go before the medical evaluation board to be medically discharged from the military. He was injured in a helicopter crash and broke his back. When he returns home and this process starts we will no longer have insurance until my boys come off of the medicaid waiver waiting list. I just don't know how to be in 2 places at one time. Both kids need the surgeries. If I don't have them done soon they may not get them done for a very long time and could get worse. If I do have them done how do I choose which one is more important and which one to do first?

And when Karsen has his surgery done for sinus how is he still able to have his o2 on because it goes in his nose. Wouldn't it dry out his incision and make it hurt worse? He is only 3 and has had more surgeries than I have fingers on one hand before he was 1. He was diagnosed with CFRD at the age of 2. None of his docs have seen any one so young have this. He has been on an insulin pump since January. He has been on continous O2 since he was 4 months old. He had a nissen fundoplication done at 6 months old and had a g tube placed. He had it removed and then 9 months later had to have it put back in because he was failure to thrive at 3% on the growth chart. Is there anyone else on here who has a litle on on the O's. I feel so alone in all of this because I know no one who has a kiddo with CF with as many problems as my 3 year old at the age of 3. most of the kids with CF don't develop the same problems till much older. I really question myself and think that I am doing things wrong.....

Shannon

 

[crook6789]

I am a stay at home mom to 3 great kids. My oldest who is about to turn 11, my daughter who is 7 and my little guy who is 3. MY oldest and my little guy both have CF. My daughter is not even a carrier. Kayin the 11 year old is not very severe. He is on meds and the vest. He was just scoped with a bravo and he has severe reflux and esophigitis. I am sure they are going to try and convince me to do the nissen fundoplication on him. I am not sure if it is a good decision at his age. My little guy Karsen is very severe. We have been unable to find either one of the boys second gene. They are both DF508 with the other gene unknown. Sweat numbers have been all over the place. Kayin is usually 39 or 41 and Karsen is 41 or 42. Depends on where and when the tests were taken. Both of the boys had the nasal differential test and were positive for polyps and what ever else it showed. Kayin had sinus surgery with a T&A at the age of 4 and has had numerous sinus infections since. His latest CT showed sinus disease but not severe any more. I am not sure how that could happen but it did. Karsen just has a sinus CT done and the ENT said he is very worried about him because he has not seen a sinus CT look that bad in a 3y/o with CF in a while. He is scheduled to have sinus surgery in July. With both boys possibly facing surgery I just don't know if I can do it alone. My husband is currently in Iraq. One of the surgeries would be in one town and the other would be an hour away at the children's hospital. I can not be in two places at once. When my husband comes home he will go before the medical evaluation board to be medically discharged from the military. He was injured in a helicopter crash and broke his back. When he returns home and this process starts we will no longer have insurance until my boys come off of the medicaid waiver waiting list. I just don't know how to be in 2 places at one time. Both kids need the surgeries. If I don't have them done soon they may not get them done for a very long time and could get worse. If I do have them done how do I choose which one is more important and which one to do first?

And when Karsen has his surgery done for sinus how is he still able to have his o2 on because it goes in his nose. Wouldn't it dry out his incision and make it hurt worse? He is only 3 and has had more surgeries than I have fingers on one hand before he was 1. He was diagnosed with CFRD at the age of 2. None of his docs have seen any one so young have this. He has been on an insulin pump since January. He has been on continous O2 since he was 4 months old. He had a nissen fundoplication done at 6 months old and had a g tube placed. He had it removed and then 9 months later had to have it put back in because he was failure to thrive at 3% on the growth chart. Is there anyone else on here who has a litle on on the O's. I feel so alone in all of this because I know no one who has a kiddo with CF with as many problems as my 3 year old at the age of 3. most of the kids with CF don't develop the same problems till much older. I really question myself and think that I am doing things wrong.....

Shannon

 

[crook6789]

I am a stay at home mom to 3 great kids. My oldest who is about to turn 11, my daughter who is 7 and my little guy who is 3. MY oldest and my little guy both have CF. My daughter is not even a carrier. Kayin the 11 year old is not very severe. He is on meds and the vest. He was just scoped with a bravo and he has severe reflux and esophigitis. I am sure they are going to try and convince me to do the nissen fundoplication on him. I am not sure if it is a good decision at his age. My little guy Karsen is very severe. We have been unable to find either one of the boys second gene. They are both DF508 with the other gene unknown. Sweat numbers have been all over the place. Kayin is usually 39 or 41 and Karsen is 41 or 42. Depends on where and when the tests were taken. Both of the boys had the nasal differential test and were positive for polyps and what ever else it showed. Kayin had sinus surgery with a T&A at the age of 4 and has had numerous sinus infections since. His latest CT showed sinus disease but not severe any more. I am not sure how that could happen but it did. Karsen just has a sinus CT done and the ENT said he is very worried about him because he has not seen a sinus CT look that bad in a 3y/o with CF in a while. He is scheduled to have sinus surgery in July. With both boys possibly facing surgery I just don't know if I can do it alone. My husband is currently in Iraq. One of the surgeries would be in one town and the other would be an hour away at the children's hospital. I can not be in two places at once. When my husband comes home he will go before the medical evaluation board to be medically discharged from the military. He was injured in a helicopter crash and broke his back. When he returns home and this process starts we will no longer have insurance until my boys come off of the medicaid waiver waiting list. I just don't know how to be in 2 places at one time. Both kids need the surgeries. If I don't have them done soon they may not get them done for a very long time and could get worse. If I do have them done how do I choose which one is more important and which one to do first?

And when Karsen has his surgery done for sinus how is he still able to have his o2 on because it goes in his nose. Wouldn't it dry out his incision and make it hurt worse? He is only 3 and has had more surgeries than I have fingers on one hand before he was 1. He was diagnosed with CFRD at the age of 2. None of his docs have seen any one so young have this. He has been on an insulin pump since January. He has been on continous O2 since he was 4 months old. He had a nissen fundoplication done at 6 months old and had a g tube placed. He had it removed and then 9 months later had to have it put back in because he was failure to thrive at 3% on the growth chart. Is there anyone else on here who has a litle on on the O's. I feel so alone in all of this because I know no one who has a kiddo with CF with as many problems as my 3 year old at the age of 3. most of the kids with CF don't develop the same problems till much older. I really question myself and think that I am doing things wrong.....

Shannon

 

[crook6789]

I am a stay at home mom to 3 great kids. My oldest who is about to turn 11, my daughter who is 7 and my little guy who is 3. MY oldest and my little guy both have CF. My daughter is not even a carrier. Kayin the 11 year old is not very severe. He is on meds and the vest. He was just scoped with a bravo and he has severe reflux and esophigitis. I am sure they are going to try and convince me to do the nissen fundoplication on him. I am not sure if it is a good decision at his age. My little guy Karsen is very severe. We have been unable to find either one of the boys second gene. They are both DF508 with the other gene unknown. Sweat numbers have been all over the place. Kayin is usually 39 or 41 and Karsen is 41 or 42. Depends on where and when the tests were taken. Both of the boys had the nasal differential test and were positive for polyps and what ever else it showed. Kayin had sinus surgery with a T&A at the age of 4 and has had numerous sinus infections since. His latest CT showed sinus disease but not severe any more. I am not sure how that could happen but it did. Karsen just has a sinus CT done and the ENT said he is very worried about him because he has not seen a sinus CT look that bad in a 3y/o with CF in a while. He is scheduled to have sinus surgery in July. With both boys possibly facing surgery I just don't know if I can do it alone. My husband is currently in Iraq. One of the surgeries would be in one town and the other would be an hour away at the children's hospital. I can not be in two places at once. When my husband comes home he will go before the medical evaluation board to be medically discharged from the military. He was injured in a helicopter crash and broke his back. When he returns home and this process starts we will no longer have insurance until my boys come off of the medicaid waiver waiting list. I just don't know how to be in 2 places at one time. Both kids need the surgeries. If I don't have them done soon they may not get them done for a very long time and could get worse. If I do have them done how do I choose which one is more important and which one to do first?
<br />
<br />And when Karsen has his surgery done for sinus how is he still able to have his o2 on because it goes in his nose. Wouldn't it dry out his incision and make it hurt worse? He is only 3 and has had more surgeries than I have fingers on one hand before he was 1. He was diagnosed with CFRD at the age of 2. None of his docs have seen any one so young have this. He has been on an insulin pump since January. He has been on continous O2 since he was 4 months old. He had a nissen fundoplication done at 6 months old and had a g tube placed. He had it removed and then 9 months later had to have it put back in because he was failure to thrive at 3% on the growth chart. Is there anyone else on here who has a litle on on the O's. I feel so alone in all of this because I know no one who has a kiddo with CF with as many problems as my 3 year old at the age of 3. most of the kids with CF don't develop the same problems till much older. I really question myself and think that I am doing things wrong.....
<br />
<br />Shannon

 

[paysmom]

I just wanted to say sorry you are having such a tough time and I hope the boys get better soon. Welcome this site helps alot and everyone is wonderful and you will be in our prayers.

 

[paysmom]

I just wanted to say sorry you are having such a tough time and I hope the boys get better soon. Welcome this site helps alot and everyone is wonderful and you will be in our prayers.

 

[paysmom]

I just wanted to say sorry you are having such a tough time and I hope the boys get better soon. Welcome this site helps alot and everyone is wonderful and you will be in our prayers.

 

[paysmom]

I just wanted to say sorry you are having such a tough time and I hope the boys get better soon. Welcome this site helps alot and everyone is wonderful and you will be in our prayers.

 

[paysmom]

I just wanted to say sorry you are having such a tough time and I hope the boys get better soon. Welcome this site helps alot and everyone is wonderful and you will be in our prayers.

 

[pjspiegle]

Hi Shannon,

I wanted to tell you that you cannot blame yourself or think that you are doing something wrong, it is what it is. I know very different kinds of CF moms and most of the time it has nothing to do with what they are doing or how, the exception is when the parent is in denial and not taking care of the CF at all, which doesn't sound like you at all.

My friend has 2 with CF and they are both at very different stages of the disease. The older one is doing great while the younger one has all kinds of issues.

My son does 02 while he sleeps at night and occassionally during the day if needed. He too has had many sinus surgeries and does just fine with the 02 and it doesn't bother the surgery stuff at all. I am trying to remember when he started his 02 and can't pinpoint it it has been so long, I know he had it when he started kindergarten, I am thinking he was around 4. Mostly just at night when he is sleeping but occasionaly 24/7 if stuff is acting up for him. My best guess is that after the sinus surgery, you may find that he won't need it 24/7 until it gets close to time for another surgery. Sometimes when the nose is all clogged up with stuff, they don't breath as well and don't need 02 after it is cleaned out. I hope this is the case for your little one and he will be able to take a break, at least during the day, from his 02.

Let me know if there is anything I can do to help you in some way,

Patty

 

[pjspiegle]

Hi Shannon,

I wanted to tell you that you cannot blame yourself or think that you are doing something wrong, it is what it is. I know very different kinds of CF moms and most of the time it has nothing to do with what they are doing or how, the exception is when the parent is in denial and not taking care of the CF at all, which doesn't sound like you at all.

My friend has 2 with CF and they are both at very different stages of the disease. The older one is doing great while the younger one has all kinds of issues.

My son does 02 while he sleeps at night and occassionally during the day if needed. He too has had many sinus surgeries and does just fine with the 02 and it doesn't bother the surgery stuff at all. I am trying to remember when he started his 02 and can't pinpoint it it has been so long, I know he had it when he started kindergarten, I am thinking he was around 4. Mostly just at night when he is sleeping but occasionaly 24/7 if stuff is acting up for him. My best guess is that after the sinus surgery, you may find that he won't need it 24/7 until it gets close to time for another surgery. Sometimes when the nose is all clogged up with stuff, they don't breath as well and don't need 02 after it is cleaned out. I hope this is the case for your little one and he will be able to take a break, at least during the day, from his 02.

Let me know if there is anything I can do to help you in some way,

Patty

 

[pjspiegle]

Hi Shannon,

I wanted to tell you that you cannot blame yourself or think that you are doing something wrong, it is what it is. I know very different kinds of CF moms and most of the time it has nothing to do with what they are doing or how, the exception is when the parent is in denial and not taking care of the CF at all, which doesn't sound like you at all.

My friend has 2 with CF and they are both at very different stages of the disease. The older one is doing great while the younger one has all kinds of issues.

My son does 02 while he sleeps at night and occassionally during the day if needed. He too has had many sinus surgeries and does just fine with the 02 and it doesn't bother the surgery stuff at all. I am trying to remember when he started his 02 and can't pinpoint it it has been so long, I know he had it when he started kindergarten, I am thinking he was around 4. Mostly just at night when he is sleeping but occasionaly 24/7 if stuff is acting up for him. My best guess is that after the sinus surgery, you may find that he won't need it 24/7 until it gets close to time for another surgery. Sometimes when the nose is all clogged up with stuff, they don't breath as well and don't need 02 after it is cleaned out. I hope this is the case for your little one and he will be able to take a break, at least during the day, from his 02.

Let me know if there is anything I can do to help you in some way,

Patty

 

[pjspiegle]

Hi Shannon,

I wanted to tell you that you cannot blame yourself or think that you are doing something wrong, it is what it is. I know very different kinds of CF moms and most of the time it has nothing to do with what they are doing or how, the exception is when the parent is in denial and not taking care of the CF at all, which doesn't sound like you at all.

My friend has 2 with CF and they are both at very different stages of the disease. The older one is doing great while the younger one has all kinds of issues.

My son does 02 while he sleeps at night and occassionally during the day if needed. He too has had many sinus surgeries and does just fine with the 02 and it doesn't bother the surgery stuff at all. I am trying to remember when he started his 02 and can't pinpoint it it has been so long, I know he had it when he started kindergarten, I am thinking he was around 4. Mostly just at night when he is sleeping but occasionaly 24/7 if stuff is acting up for him. My best guess is that after the sinus surgery, you may find that he won't need it 24/7 until it gets close to time for another surgery. Sometimes when the nose is all clogged up with stuff, they don't breath as well and don't need 02 after it is cleaned out. I hope this is the case for your little one and he will be able to take a break, at least during the day, from his 02.

Let me know if there is anything I can do to help you in some way,

Patty

 

[pjspiegle]

Hi Shannon,
<br />
<br />I wanted to tell you that you cannot blame yourself or think that you are doing something wrong, it is what it is. I know very different kinds of CF moms and most of the time it has nothing to do with what they are doing or how, the exception is when the parent is in denial and not taking care of the CF at all, which doesn't sound like you at all.
<br />
<br />My friend has 2 with CF and they are both at very different stages of the disease. The older one is doing great while the younger one has all kinds of issues.
<br />
<br />My son does 02 while he sleeps at night and occassionally during the day if needed. He too has had many sinus surgeries and does just fine with the 02 and it doesn't bother the surgery stuff at all. I am trying to remember when he started his 02 and can't pinpoint it it has been so long, I know he had it when he started kindergarten, I am thinking he was around 4. Mostly just at night when he is sleeping but occasionaly 24/7 if stuff is acting up for him. My best guess is that after the sinus surgery, you may find that he won't need it 24/7 until it gets close to time for another surgery. Sometimes when the nose is all clogged up with stuff, they don't breath as well and don't need 02 after it is cleaned out. I hope this is the case for your little one and he will be able to take a break, at least during the day, from his 02.
<br />
<br />Let me know if there is anything I can do to help you in some way,
<br />
<br />Patty

 

[Alyssa]

No, you are not doing anything wrong - some kids with CF just do not do well even though the parents and doctors have done all the right things - it sucks, but it happens and it's not your fault.

As far as being in both places at once, that is sooo hard, but I think you said it best - because of the insurance question and timing you should get the surgeries done as soon as possible. Have you shared the surgery dates with each doctor or talked with the CF team social worker about it? Maybe someone can get them scheduled a little bit farther apart but still done quickly while they are still covered. If it is not possible to change the date, is there a good friend or relative who can go with one of them?

Best wishes - please keep us posted.

 

[Alyssa]

No, you are not doing anything wrong - some kids with CF just do not do well even though the parents and doctors have done all the right things - it sucks, but it happens and it's not your fault.

As far as being in both places at once, that is sooo hard, but I think you said it best - because of the insurance question and timing you should get the surgeries done as soon as possible. Have you shared the surgery dates with each doctor or talked with the CF team social worker about it? Maybe someone can get them scheduled a little bit farther apart but still done quickly while they are still covered. If it is not possible to change the date, is there a good friend or relative who can go with one of them?

Best wishes - please keep us posted.

 

[Alyssa]

No, you are not doing anything wrong - some kids with CF just do not do well even though the parents and doctors have done all the right things - it sucks, but it happens and it's not your fault.

As far as being in both places at once, that is sooo hard, but I think you said it best - because of the insurance question and timing you should get the surgeries done as soon as possible. Have you shared the surgery dates with each doctor or talked with the CF team social worker about it? Maybe someone can get them scheduled a little bit farther apart but still done quickly while they are still covered. If it is not possible to change the date, is there a good friend or relative who can go with one of them?

Best wishes - please keep us posted.

 

[Alyssa]

No, you are not doing anything wrong - some kids with CF just do not do well even though the parents and doctors have done all the right things - it sucks, but it happens and it's not your fault.

As far as being in both places at once, that is sooo hard, but I think you said it best - because of the insurance question and timing you should get the surgeries done as soon as possible. Have you shared the surgery dates with each doctor or talked with the CF team social worker about it? Maybe someone can get them scheduled a little bit farther apart but still done quickly while they are still covered. If it is not possible to change the date, is there a good friend or relative who can go with one of them?

Best wishes - please keep us posted.

 

[Alyssa]

No, you are not doing anything wrong - some kids with CF just do not do well even though the parents and doctors have done all the right things - it sucks, but it happens and it's not your fault.
<br />
<br />As far as being in both places at once, that is sooo hard, but I think you said it best - because of the insurance question and timing you should get the surgeries done as soon as possible. Have you shared the surgery dates with each doctor or talked with the CF team social worker about it? Maybe someone can get them scheduled a little bit farther apart but still done quickly while they are still covered. If it is not possible to change the date, is there a good friend or relative who can go with one of them?
<br />
<br />Best wishes - please keep us posted.
<br />
<br />