3 week old with CF

[TestifyToLove]

Our ds as diagnosed at 3 days due to a meconium illeus. He spent his first 78 days in the hospital for complications, had 3 bowel surgeries and came out completely refusing to eat orally. He didn't join our family until he was 6 and I get very upset to see the lack of bonding and support he had as a newborn because his bio-parents were never able to step up and care for him properly irt his CF needs.

 

[TestifyToLove]

Our ds as diagnosed at 3 days due to a meconium illeus. He spent his first 78 days in the hospital for complications, had 3 bowel surgeries and came out completely refusing to eat orally. He didn't join our family until he was 6 and I get very upset to see the lack of bonding and support he had as a newborn because his bio-parents were never able to step up and care for him properly irt his CF needs.

 

[TestifyToLove]

Our ds as diagnosed at 3 days due to a meconium illeus. He spent his first 78 days in the hospital for complications, had 3 bowel surgeries and came out completely refusing to eat orally. He didn't join our family until he was 6 and I get very upset to see the lack of bonding and support he had as a newborn because his bio-parents were never able to step up and care for him properly irt his CF needs.

 

[TestifyToLove]

Our ds as diagnosed at 3 days due to a meconium illeus. He spent his first 78 days in the hospital for complications, had 3 bowel surgeries and came out completely refusing to eat orally. He didn't join our family until he was 6 and I get very upset to see the lack of bonding and support he had as a newborn because his bio-parents were never able to step up and care for him properly irt his CF needs.

 

[TestifyToLove]

Our ds as diagnosed at 3 days due to a meconium illeus. He spent his first 78 days in the hospital for complications, had 3 bowel surgeries and came out completely refusing to eat orally. He didn't join our family until he was 6 and I get very upset to see the lack of bonding and support he had as a newborn because his bio-parents were never able to step up and care for him properly irt his CF needs.

 

[sdelorenzo]

Both of my children were diagnosed their first month and are doing well. Regarding your question about sinus surgery. Sinus problems often go along with cf. My nephew (also with cf) has always had sinus infections and has had two surgeries as a result. I knew about his problems so I have taken my children to see the ENT dr every few years for a check-up even though they have had zero problems with their sinuses (no runny noses, no infections, no complaints, nothing). At our last check-up in March, the dr said they should get cat scans of their sinuses to get a baseline for future reference. Well both cat scans showed complete blockage of their sinuses. So my son just got sinus surgery last month. He has done fine (except for he now has this cough from drainage we think). We are waiting to get my daughter's surgery.

You are doing a great job of educating yourself. Keep up the good work and enjoy your precious daughter.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

Both of my children were diagnosed their first month and are doing well. Regarding your question about sinus surgery. Sinus problems often go along with cf. My nephew (also with cf) has always had sinus infections and has had two surgeries as a result. I knew about his problems so I have taken my children to see the ENT dr every few years for a check-up even though they have had zero problems with their sinuses (no runny noses, no infections, no complaints, nothing). At our last check-up in March, the dr said they should get cat scans of their sinuses to get a baseline for future reference. Well both cat scans showed complete blockage of their sinuses. So my son just got sinus surgery last month. He has done fine (except for he now has this cough from drainage we think). We are waiting to get my daughter's surgery.

You are doing a great job of educating yourself. Keep up the good work and enjoy your precious daughter.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

Both of my children were diagnosed their first month and are doing well. Regarding your question about sinus surgery. Sinus problems often go along with cf. My nephew (also with cf) has always had sinus infections and has had two surgeries as a result. I knew about his problems so I have taken my children to see the ENT dr every few years for a check-up even though they have had zero problems with their sinuses (no runny noses, no infections, no complaints, nothing). At our last check-up in March, the dr said they should get cat scans of their sinuses to get a baseline for future reference. Well both cat scans showed complete blockage of their sinuses. So my son just got sinus surgery last month. He has done fine (except for he now has this cough from drainage we think). We are waiting to get my daughter's surgery.

You are doing a great job of educating yourself. Keep up the good work and enjoy your precious daughter.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

Both of my children were diagnosed their first month and are doing well. Regarding your question about sinus surgery. Sinus problems often go along with cf. My nephew (also with cf) has always had sinus infections and has had two surgeries as a result. I knew about his problems so I have taken my children to see the ENT dr every few years for a check-up even though they have had zero problems with their sinuses (no runny noses, no infections, no complaints, nothing). At our last check-up in March, the dr said they should get cat scans of their sinuses to get a baseline for future reference. Well both cat scans showed complete blockage of their sinuses. So my son just got sinus surgery last month. He has done fine (except for he now has this cough from drainage we think). We are waiting to get my daughter's surgery.

You are doing a great job of educating yourself. Keep up the good work and enjoy your precious daughter.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

Both of my children were diagnosed their first month and are doing well. Regarding your question about sinus surgery. Sinus problems often go along with cf. My nephew (also with cf) has always had sinus infections and has had two surgeries as a result. I knew about his problems so I have taken my children to see the ENT dr every few years for a check-up even though they have had zero problems with their sinuses (no runny noses, no infections, no complaints, nothing). At our last check-up in March, the dr said they should get cat scans of their sinuses to get a baseline for future reference. Well both cat scans showed complete blockage of their sinuses. So my son just got sinus surgery last month. He has done fine (except for he now has this cough from drainage we think). We are waiting to get my daughter's surgery.
<br />
<br />You are doing a great job of educating yourself. Keep up the good work and enjoy your precious daughter.
<br />Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[CowTown]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

A few more questions -

1. After chest percussions, should I eventually expect to hear her cough as if clearing mucous?

2. How do I avoid pseudomonas? I've already become paranoid about water in my yard! Should I be that concerned?

3. Someone posted that their child underwent sinus surgeries due to CF - what was the cause for the surgeries?</end quote></div>




#1:
Yes, chest percussion helps to loosen the mucous and bring it up. It is preventative maintenance. It's purpose is to help get all the gunk out of the lungs so it does not sit there creating a great place for infection to live.

Sometimes if she is doing really well and her lungs are clear you might not hear her cough or cough up much. Eventually you will, which is good thing and the purpose of chest percussion. <img src="i/expressions/face-icon-small-smile.gif" border="0">


#2:
Pseudomonas is a tough one to avoid. A lot of CFers get it and have a tough getting rid of it. It just seems to linger. I've had it since I was a 12 or something. When I get sick the treatments usually aim to reduce my pseudomonas flare ups.


#3:
Sinus sergeries are needed sometimes when your sinuses fill up with mucous causing pressure (headaches), polyps and infection. When your sinuses are full of mucous the worry is that they drain down into your lungs and create extra problems with your lung infections. Sinuses and lungs are connected so you need to try and keep them both clear. Some people don't have many sinus issues at all though. Every one is different in terms of what they have to deal with, and sinuses are no different. I've had 4 (I think) sinus surgeries and after each one I felt a lot better and more clear.



Welcome! <img src=""> <img src="">

 

[CowTown]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

A few more questions -

1. After chest percussions, should I eventually expect to hear her cough as if clearing mucous?

2. How do I avoid pseudomonas? I've already become paranoid about water in my yard! Should I be that concerned?

3. Someone posted that their child underwent sinus surgeries due to CF - what was the cause for the surgeries?</end quote></div>




#1:
Yes, chest percussion helps to loosen the mucous and bring it up. It is preventative maintenance. It's purpose is to help get all the gunk out of the lungs so it does not sit there creating a great place for infection to live.

Sometimes if she is doing really well and her lungs are clear you might not hear her cough or cough up much. Eventually you will, which is good thing and the purpose of chest percussion. <img src="i/expressions/face-icon-small-smile.gif" border="0">


#2:
Pseudomonas is a tough one to avoid. A lot of CFers get it and have a tough getting rid of it. It just seems to linger. I've had it since I was a 12 or something. When I get sick the treatments usually aim to reduce my pseudomonas flare ups.


#3:
Sinus sergeries are needed sometimes when your sinuses fill up with mucous causing pressure (headaches), polyps and infection. When your sinuses are full of mucous the worry is that they drain down into your lungs and create extra problems with your lung infections. Sinuses and lungs are connected so you need to try and keep them both clear. Some people don't have many sinus issues at all though. Every one is different in terms of what they have to deal with, and sinuses are no different. I've had 4 (I think) sinus surgeries and after each one I felt a lot better and more clear.



Welcome! <img src=""> <img src="">

 

[CowTown]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

A few more questions -

1. After chest percussions, should I eventually expect to hear her cough as if clearing mucous?

2. How do I avoid pseudomonas? I've already become paranoid about water in my yard! Should I be that concerned?

3. Someone posted that their child underwent sinus surgeries due to CF - what was the cause for the surgeries?</end quote></div>




#1:
Yes, chest percussion helps to loosen the mucous and bring it up. It is preventative maintenance. It's purpose is to help get all the gunk out of the lungs so it does not sit there creating a great place for infection to live.

Sometimes if she is doing really well and her lungs are clear you might not hear her cough or cough up much. Eventually you will, which is good thing and the purpose of chest percussion. <img src="i/expressions/face-icon-small-smile.gif" border="0">


#2:
Pseudomonas is a tough one to avoid. A lot of CFers get it and have a tough getting rid of it. It just seems to linger. I've had it since I was a 12 or something. When I get sick the treatments usually aim to reduce my pseudomonas flare ups.


#3:
Sinus sergeries are needed sometimes when your sinuses fill up with mucous causing pressure (headaches), polyps and infection. When your sinuses are full of mucous the worry is that they drain down into your lungs and create extra problems with your lung infections. Sinuses and lungs are connected so you need to try and keep them both clear. Some people don't have many sinus issues at all though. Every one is different in terms of what they have to deal with, and sinuses are no different. I've had 4 (I think) sinus surgeries and after each one I felt a lot better and more clear.



Welcome! <img src=""> <img src="">

 

[CowTown]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>

A few more questions -

1. After chest percussions, should I eventually expect to hear her cough as if clearing mucous?

2. How do I avoid pseudomonas? I've already become paranoid about water in my yard! Should I be that concerned?

3. Someone posted that their child underwent sinus surgeries due to CF - what was the cause for the surgeries?</end quote>




#1:
Yes, chest percussion helps to loosen the mucous and bring it up. It is preventative maintenance. It's purpose is to help get all the gunk out of the lungs so it does not sit there creating a great place for infection to live.

Sometimes if she is doing really well and her lungs are clear you might not hear her cough or cough up much. Eventually you will, which is good thing and the purpose of chest percussion. <img src="i/expressions/face-icon-small-smile.gif" border="0">


#2:
Pseudomonas is a tough one to avoid. A lot of CFers get it and have a tough getting rid of it. It just seems to linger. I've had it since I was a 12 or something. When I get sick the treatments usually aim to reduce my pseudomonas flare ups.


#3:
Sinus sergeries are needed sometimes when your sinuses fill up with mucous causing pressure (headaches), polyps and infection. When your sinuses are full of mucous the worry is that they drain down into your lungs and create extra problems with your lung infections. Sinuses and lungs are connected so you need to try and keep them both clear. Some people don't have many sinus issues at all though. Every one is different in terms of what they have to deal with, and sinuses are no different. I've had 4 (I think) sinus surgeries and after each one I felt a lot better and more clear.



Welcome! <img src=""> <img src="">

 

[CowTown]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>
<br />
<br />A few more questions -
<br />
<br />1. After chest percussions, should I eventually expect to hear her cough as if clearing mucous?
<br />
<br />2. How do I avoid pseudomonas? I've already become paranoid about water in my yard! Should I be that concerned?
<br />
<br />3. Someone posted that their child underwent sinus surgeries due to CF - what was the cause for the surgeries?</end quote>
<br />
<br />
<br />
<br />
<br />#1:
<br />Yes, chest percussion helps to loosen the mucous and bring it up. It is preventative maintenance. It's purpose is to help get all the gunk out of the lungs so it does not sit there creating a great place for infection to live.
<br />
<br />Sometimes if she is doing really well and her lungs are clear you might not hear her cough or cough up much. Eventually you will, which is good thing and the purpose of chest percussion. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />
<br />#2:
<br />Pseudomonas is a tough one to avoid. A lot of CFers get it and have a tough getting rid of it. It just seems to linger. I've had it since I was a 12 or something. When I get sick the treatments usually aim to reduce my pseudomonas flare ups.
<br />
<br />
<br />#3:
<br />Sinus sergeries are needed sometimes when your sinuses fill up with mucous causing pressure (headaches), polyps and infection. When your sinuses are full of mucous the worry is that they drain down into your lungs and create extra problems with your lung infections. Sinuses and lungs are connected so you need to try and keep them both clear. Some people don't have many sinus issues at all though. Every one is different in terms of what they have to deal with, and sinuses are no different. I've had 4 (I think) sinus surgeries and after each one I felt a lot better and more clear.
<br />
<br />
<br />
<br />Welcome! <img src=""> <img src="">

 

[Rebjane]

I'll take a stab at question # 1. My daughter usually does not cough unless she is coming down with a cold or she has a bacterial infection brewing. If her cough lasts more than a few days, or is getting worse, time to call the clinic. In the beginning; when your baby is little it is hard to know when to call the doctor because you are getting to know your baby and how they react to illness. So, good to ere on the side of caution and call if you are not sure. After a while you will gain confidence in what treatment works for your child and will be telling the docs what she needs<img src="i/expressions/face-icon-small-wink.gif" border="0"> Good rule to listen to your mommy instinct; it's usually right!

 

[Rebjane]

I'll take a stab at question # 1. My daughter usually does not cough unless she is coming down with a cold or she has a bacterial infection brewing. If her cough lasts more than a few days, or is getting worse, time to call the clinic. In the beginning; when your baby is little it is hard to know when to call the doctor because you are getting to know your baby and how they react to illness. So, good to ere on the side of caution and call if you are not sure. After a while you will gain confidence in what treatment works for your child and will be telling the docs what she needs<img src="i/expressions/face-icon-small-wink.gif" border="0"> Good rule to listen to your mommy instinct; it's usually right!

 

[Rebjane]

I'll take a stab at question # 1. My daughter usually does not cough unless she is coming down with a cold or she has a bacterial infection brewing. If her cough lasts more than a few days, or is getting worse, time to call the clinic. In the beginning; when your baby is little it is hard to know when to call the doctor because you are getting to know your baby and how they react to illness. So, good to ere on the side of caution and call if you are not sure. After a while you will gain confidence in what treatment works for your child and will be telling the docs what she needs<img src="i/expressions/face-icon-small-wink.gif" border="0"> Good rule to listen to your mommy instinct; it's usually right!

 

[Rebjane]

I'll take a stab at question # 1. My daughter usually does not cough unless she is coming down with a cold or she has a bacterial infection brewing. If her cough lasts more than a few days, or is getting worse, time to call the clinic. In the beginning; when your baby is little it is hard to know when to call the doctor because you are getting to know your baby and how they react to illness. So, good to ere on the side of caution and call if you are not sure. After a while you will gain confidence in what treatment works for your child and will be telling the docs what she needs<img src="i/expressions/face-icon-small-wink.gif" border="0"> Good rule to listen to your mommy instinct; it's usually right!

 

[Rebjane]

I'll take a stab at question # 1. My daughter usually does not cough unless she is coming down with a cold or she has a bacterial infection brewing. If her cough lasts more than a few days, or is getting worse, time to call the clinic. In the beginning; when your baby is little it is hard to know when to call the doctor because you are getting to know your baby and how they react to illness. So, good to ere on the side of caution and call if you are not sure. After a while you will gain confidence in what treatment works for your child and will be telling the docs what she needs<img src="i/expressions/face-icon-small-wink.gif" border="0"> Good rule to listen to your mommy instinct; it's usually right!