Is it severe???

[ashmomo]

Hi
My baby is just over 4 months old and has been on nebs since shortly after birth in the hospital. She is on Pulmozyme, Albuterol, Hypertonic Saline 7% mixed w/ sodium chloride .9%, and will now be starting TOBI cuz she just cultured Psuedos. It is alot and I am not looking forward to this TOBI...hopefully it tackles it the first time and we don't have to do it again after the next month. She is on 11 precripts all together now. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I would definitely talk to them about nebulizers. Esp albuterol, it helps open up the airways.
She had surgery and I think has had a cough since just shortly after birth...maybe after first surgery? Sounds like she needs more care, better doctors?? Not sure if they are informed enough about CF and its needs.

Good luck, I hope she gets the meds to help her stop coughing.

 

[ashmomo]

Hi
My baby is just over 4 months old and has been on nebs since shortly after birth in the hospital. She is on Pulmozyme, Albuterol, Hypertonic Saline 7% mixed w/ sodium chloride .9%, and will now be starting TOBI cuz she just cultured Psuedos. It is alot and I am not looking forward to this TOBI...hopefully it tackles it the first time and we don't have to do it again after the next month. She is on 11 precripts all together now. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I would definitely talk to them about nebulizers. Esp albuterol, it helps open up the airways.
She had surgery and I think has had a cough since just shortly after birth...maybe after first surgery? Sounds like she needs more care, better doctors?? Not sure if they are informed enough about CF and its needs.

Good luck, I hope she gets the meds to help her stop coughing.

 

[ashmomo]

Hi
My baby is just over 4 months old and has been on nebs since shortly after birth in the hospital. She is on Pulmozyme, Albuterol, Hypertonic Saline 7% mixed w/ sodium chloride .9%, and will now be starting TOBI cuz she just cultured Psuedos. It is alot and I am not looking forward to this TOBI...hopefully it tackles it the first time and we don't have to do it again after the next month. She is on 11 precripts all together now. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I would definitely talk to them about nebulizers. Esp albuterol, it helps open up the airways.
She had surgery and I think has had a cough since just shortly after birth...maybe after first surgery? Sounds like she needs more care, better doctors?? Not sure if they are informed enough about CF and its needs.

Good luck, I hope she gets the meds to help her stop coughing.

 

[ashmomo]

Hi
My baby is just over 4 months old and has been on nebs since shortly after birth in the hospital. She is on Pulmozyme, Albuterol, Hypertonic Saline 7% mixed w/ sodium chloride .9%, and will now be starting TOBI cuz she just cultured Psuedos. It is alot and I am not looking forward to this TOBI...hopefully it tackles it the first time and we don't have to do it again after the next month. She is on 11 precripts all together now. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I would definitely talk to them about nebulizers. Esp albuterol, it helps open up the airways.
She had surgery and I think has had a cough since just shortly after birth...maybe after first surgery? Sounds like she needs more care, better doctors?? Not sure if they are informed enough about CF and its needs.

Good luck, I hope she gets the meds to help her stop coughing.

 

[ashmomo]

Hi
<br />My baby is just over 4 months old and has been on nebs since shortly after birth in the hospital. She is on Pulmozyme, Albuterol, Hypertonic Saline 7% mixed w/ sodium chloride .9%, and will now be starting TOBI cuz she just cultured Psuedos. It is alot and I am not looking forward to this TOBI...hopefully it tackles it the first time and we don't have to do it again after the next month. She is on 11 precripts all together now. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I would definitely talk to them about nebulizers. Esp albuterol, it helps open up the airways.
<br />She had surgery and I think has had a cough since just shortly after birth...maybe after first surgery? Sounds like she needs more care, better doctors?? Not sure if they are informed enough about CF and its needs.
<br />
<br />Good luck, I hope she gets the meds to help her stop coughing.

 

[amityvsvenom]

My daughter will be 1 year old in 3 weeks. At about 6 months this same thing happened to her. She has trachial milacia as well and had RSV and Bronchitis. They also found out while doing a Bronc. Skye has Double Delta f508...df508 is the most common but most severe cf gene...becuase skye has two it is really hard for her.
It affects both her lungs and intestines really bad. She has had 4 operations and she has had a g tube since she was 1 day old. She also had an ileostomy for a few months too. She now has liver disease as well and her spleen is enlarged.
There are ALL types of severities with CF. Some people are so minor and some are VERY severe.
Only time will tell, and all you can do is pray.
Skye is a little warrior and we are getting ready for this fall and winter. We are going to our hardest to stay out of the hospital.

If you ever need anyone to talk to, please message me. I know I need people to talk to. So Id like it if you would give me a shout! Im still "grieving" I guess you could say, and I do have alot of trouble couping with it all.

 

[amityvsvenom]

My daughter will be 1 year old in 3 weeks. At about 6 months this same thing happened to her. She has trachial milacia as well and had RSV and Bronchitis. They also found out while doing a Bronc. Skye has Double Delta f508...df508 is the most common but most severe cf gene...becuase skye has two it is really hard for her.
It affects both her lungs and intestines really bad. She has had 4 operations and she has had a g tube since she was 1 day old. She also had an ileostomy for a few months too. She now has liver disease as well and her spleen is enlarged.
There are ALL types of severities with CF. Some people are so minor and some are VERY severe.
Only time will tell, and all you can do is pray.
Skye is a little warrior and we are getting ready for this fall and winter. We are going to our hardest to stay out of the hospital.

If you ever need anyone to talk to, please message me. I know I need people to talk to. So Id like it if you would give me a shout! Im still "grieving" I guess you could say, and I do have alot of trouble couping with it all.

 

[amityvsvenom]

My daughter will be 1 year old in 3 weeks. At about 6 months this same thing happened to her. She has trachial milacia as well and had RSV and Bronchitis. They also found out while doing a Bronc. Skye has Double Delta f508...df508 is the most common but most severe cf gene...becuase skye has two it is really hard for her.
It affects both her lungs and intestines really bad. She has had 4 operations and she has had a g tube since she was 1 day old. She also had an ileostomy for a few months too. She now has liver disease as well and her spleen is enlarged.
There are ALL types of severities with CF. Some people are so minor and some are VERY severe.
Only time will tell, and all you can do is pray.
Skye is a little warrior and we are getting ready for this fall and winter. We are going to our hardest to stay out of the hospital.

If you ever need anyone to talk to, please message me. I know I need people to talk to. So Id like it if you would give me a shout! Im still "grieving" I guess you could say, and I do have alot of trouble couping with it all.

 

[amityvsvenom]

My daughter will be 1 year old in 3 weeks. At about 6 months this same thing happened to her. She has trachial milacia as well and had RSV and Bronchitis. They also found out while doing a Bronc. Skye has Double Delta f508...df508 is the most common but most severe cf gene...becuase skye has two it is really hard for her.
It affects both her lungs and intestines really bad. She has had 4 operations and she has had a g tube since she was 1 day old. She also had an ileostomy for a few months too. She now has liver disease as well and her spleen is enlarged.
There are ALL types of severities with CF. Some people are so minor and some are VERY severe.
Only time will tell, and all you can do is pray.
Skye is a little warrior and we are getting ready for this fall and winter. We are going to our hardest to stay out of the hospital.

If you ever need anyone to talk to, please message me. I know I need people to talk to. So Id like it if you would give me a shout! Im still "grieving" I guess you could say, and I do have alot of trouble couping with it all.

 

[amityvsvenom]

My daughter will be 1 year old in 3 weeks. At about 6 months this same thing happened to her. She has trachial milacia as well and had RSV and Bronchitis. They also found out while doing a Bronc. Skye has Double Delta f508...df508 is the most common but most severe cf gene...becuase skye has two it is really hard for her.
<br />It affects both her lungs and intestines really bad. She has had 4 operations and she has had a g tube since she was 1 day old. She also had an ileostomy for a few months too. She now has liver disease as well and her spleen is enlarged.
<br />There are ALL types of severities with CF. Some people are so minor and some are VERY severe.
<br />Only time will tell, and all you can do is pray.
<br />Skye is a little warrior and we are getting ready for this fall and winter. We are going to our hardest to stay out of the hospital.
<br />
<br />If you ever need anyone to talk to, please message me. I know I need people to talk to. So Id like it if you would give me a shout! Im still "grieving" I guess you could say, and I do have alot of trouble couping with it all.