Alysa's Bronchoscope was done....

M

Mommy2Alysa

New member
Long story short.. her right lung was nice and clear and whatever was in there they were able to suck up. The left lung... not so good. The mucus was VERY thick AND GREEN and it even clogged the suction tube so they had to leave it.

The doctors are convinced it will grow something and fear it is pseudomonas (she grew it last year and we thought it was gone)... I know that a lot of patients get this but she is only 3 and if it is STILL There (even though she is using TOBI) it probably will never go away right?

Any other ideas what it might be? I am just tryign to prepare myself. Whatever it is the plan is to put her on oral antibiotics right away and if that doesnt work then she will be immediately admitted to the hospital for the standard 2 weeks (or more depending on what it is).

Not the results we wanted and poor little thing is coughing up a storm still. I hope its not psedu because I have Kiana to worry about as she also has CF.
 
M

Mommy2Alysa

New member
Long story short.. her right lung was nice and clear and whatever was in there they were able to suck up. The left lung... not so good. The mucus was VERY thick AND GREEN and it even clogged the suction tube so they had to leave it.

The doctors are convinced it will grow something and fear it is pseudomonas (she grew it last year and we thought it was gone)... I know that a lot of patients get this but she is only 3 and if it is STILL There (even though she is using TOBI) it probably will never go away right?

Any other ideas what it might be? I am just tryign to prepare myself. Whatever it is the plan is to put her on oral antibiotics right away and if that doesnt work then she will be immediately admitted to the hospital for the standard 2 weeks (or more depending on what it is).

Not the results we wanted and poor little thing is coughing up a storm still. I hope its not psedu because I have Kiana to worry about as she also has CF.
 
M

Mommy2Alysa

New member
Long story short.. her right lung was nice and clear and whatever was in there they were able to suck up. The left lung... not so good. The mucus was VERY thick AND GREEN and it even clogged the suction tube so they had to leave it.

The doctors are convinced it will grow something and fear it is pseudomonas (she grew it last year and we thought it was gone)... I know that a lot of patients get this but she is only 3 and if it is STILL There (even though she is using TOBI) it probably will never go away right?

Any other ideas what it might be? I am just tryign to prepare myself. Whatever it is the plan is to put her on oral antibiotics right away and if that doesnt work then she will be immediately admitted to the hospital for the standard 2 weeks (or more depending on what it is).

Not the results we wanted and poor little thing is coughing up a storm still. I hope its not psedu because I have Kiana to worry about as she also has CF.
 
M

Mommy2Alysa

New member
Long story short.. her right lung was nice and clear and whatever was in there they were able to suck up. The left lung... not so good. The mucus was VERY thick AND GREEN and it even clogged the suction tube so they had to leave it.

The doctors are convinced it will grow something and fear it is pseudomonas (she grew it last year and we thought it was gone)... I know that a lot of patients get this but she is only 3 and if it is STILL There (even though she is using TOBI) it probably will never go away right?

Any other ideas what it might be? I am just tryign to prepare myself. Whatever it is the plan is to put her on oral antibiotics right away and if that doesnt work then she will be immediately admitted to the hospital for the standard 2 weeks (or more depending on what it is).

Not the results we wanted and poor little thing is coughing up a storm still. I hope its not psedu because I have Kiana to worry about as she also has CF.
 
M

Mommy2Alysa

New member
Long story short.. her right lung was nice and clear and whatever was in there they were able to suck up. The left lung... not so good. The mucus was VERY thick AND GREEN and it even clogged the suction tube so they had to leave it.
<br />
<br />The doctors are convinced it will grow something and fear it is pseudomonas (she grew it last year and we thought it was gone)... I know that a lot of patients get this but she is only 3 and if it is STILL There (even though she is using TOBI) it probably will never go away right?
<br />
<br />Any other ideas what it might be? I am just tryign to prepare myself. Whatever it is the plan is to put her on oral antibiotics right away and if that doesnt work then she will be immediately admitted to the hospital for the standard 2 weeks (or more depending on what it is).
<br />
<br />Not the results we wanted and poor little thing is coughing up a storm still. I hope its not psedu because I have Kiana to worry about as she also has CF.
 
S

sslondon

New member
Do you live in London, ON? I think my husband and I heard you telling your story on the radio for the Children's Hospital. We live in London too.

I am new to this forum and to CF so I have no idea what could be wrong with your daughter, but I will include your family in my prayers.

When I heard your story on the radio it very much reminded me of myself and my son, for the first two and a half years of his life - lots of vomiting. At that point he was put on Prevacid and things have gotten more manageable, but he still gets chest infections, lung infections and pneumonia (he's four now) Anyway, we're looking into the Ambry test for him at the moment. We're just in the process of seeing if our insurance will cover it.

Do your daughters go to Children's Hospital here in London?
 
S

sslondon

New member
Do you live in London, ON? I think my husband and I heard you telling your story on the radio for the Children's Hospital. We live in London too.

I am new to this forum and to CF so I have no idea what could be wrong with your daughter, but I will include your family in my prayers.

When I heard your story on the radio it very much reminded me of myself and my son, for the first two and a half years of his life - lots of vomiting. At that point he was put on Prevacid and things have gotten more manageable, but he still gets chest infections, lung infections and pneumonia (he's four now) Anyway, we're looking into the Ambry test for him at the moment. We're just in the process of seeing if our insurance will cover it.

Do your daughters go to Children's Hospital here in London?
 
S

sslondon

New member
Do you live in London, ON? I think my husband and I heard you telling your story on the radio for the Children's Hospital. We live in London too.

I am new to this forum and to CF so I have no idea what could be wrong with your daughter, but I will include your family in my prayers.

When I heard your story on the radio it very much reminded me of myself and my son, for the first two and a half years of his life - lots of vomiting. At that point he was put on Prevacid and things have gotten more manageable, but he still gets chest infections, lung infections and pneumonia (he's four now) Anyway, we're looking into the Ambry test for him at the moment. We're just in the process of seeing if our insurance will cover it.

Do your daughters go to Children's Hospital here in London?
 
S

sslondon

New member
Do you live in London, ON? I think my husband and I heard you telling your story on the radio for the Children's Hospital. We live in London too.

I am new to this forum and to CF so I have no idea what could be wrong with your daughter, but I will include your family in my prayers.

When I heard your story on the radio it very much reminded me of myself and my son, for the first two and a half years of his life - lots of vomiting. At that point he was put on Prevacid and things have gotten more manageable, but he still gets chest infections, lung infections and pneumonia (he's four now) Anyway, we're looking into the Ambry test for him at the moment. We're just in the process of seeing if our insurance will cover it.

Do your daughters go to Children's Hospital here in London?
 
S

sslondon

New member
Do you live in London, ON? I think my husband and I heard you telling your story on the radio for the Children's Hospital. We live in London too.
<br />
<br />I am new to this forum and to CF so I have no idea what could be wrong with your daughter, but I will include your family in my prayers.
<br />
<br />When I heard your story on the radio it very much reminded me of myself and my son, for the first two and a half years of his life - lots of vomiting. At that point he was put on Prevacid and things have gotten more manageable, but he still gets chest infections, lung infections and pneumonia (he's four now) Anyway, we're looking into the Ambry test for him at the moment. We're just in the process of seeing if our insurance will cover it.
<br />
<br />Do your daughters go to Children's Hospital here in London?
<br />
<br />
 
M

Mommy2Alysa

New member
Wow what a small world.

Yes, we are in London, ON and that was us you heard on the radio talking about our daughters and CF.

Thanks for thinking of us and sorry to hear that your story is similar to mine <img src="i/expressions/face-icon-small-sad.gif" border="0">

Alysa and Kiana go to Children's for their appts and are actually seen by Dr. Price (she is amazing).

Hope your son is doing well <img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep in touch.
 
M

Mommy2Alysa

New member
Wow what a small world.

Yes, we are in London, ON and that was us you heard on the radio talking about our daughters and CF.

Thanks for thinking of us and sorry to hear that your story is similar to mine <img src="i/expressions/face-icon-small-sad.gif" border="0">

Alysa and Kiana go to Children's for their appts and are actually seen by Dr. Price (she is amazing).

Hope your son is doing well <img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep in touch.
 
M

Mommy2Alysa

New member
Wow what a small world.

Yes, we are in London, ON and that was us you heard on the radio talking about our daughters and CF.

Thanks for thinking of us and sorry to hear that your story is similar to mine <img src="i/expressions/face-icon-small-sad.gif" border="0">

Alysa and Kiana go to Children's for their appts and are actually seen by Dr. Price (she is amazing).

Hope your son is doing well <img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep in touch.
 
M

Mommy2Alysa

New member
Wow what a small world.

Yes, we are in London, ON and that was us you heard on the radio talking about our daughters and CF.

Thanks for thinking of us and sorry to hear that your story is similar to mine <img src="i/expressions/face-icon-small-sad.gif" border="0">

Alysa and Kiana go to Children's for their appts and are actually seen by Dr. Price (she is amazing).

Hope your son is doing well <img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep in touch.
 
M

Mommy2Alysa

New member
Wow what a small world.
<br />
<br />Yes, we are in London, ON and that was us you heard on the radio talking about our daughters and CF.
<br />
<br />Thanks for thinking of us and sorry to hear that your story is similar to mine <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Alysa and Kiana go to Children's for their appts and are actually seen by Dr. Price (she is amazing).
<br />
<br />Hope your son is doing well <img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep in touch.
 
T

TonyaH

Guest
I there,
I just wanted to let you know I'm thinking of you. I will be in your shoes on Friday and was also there last November. It's so hard to wait for cultures to grow out.

I'm not going to tell you not to worry because that's just silly. But I will tell you that it is possible to eradicate PA. The older a patient gets, and the number of exacerbations they have play a role in the ability to eradicate it, but it is possible. Please let us know what you hear from the doctor! I'll keep my fingers crossed that whatever this little trouble-making bug is, it will be easy to get rid of.
 
T

TonyaH

Guest
I there,
I just wanted to let you know I'm thinking of you. I will be in your shoes on Friday and was also there last November. It's so hard to wait for cultures to grow out.

I'm not going to tell you not to worry because that's just silly. But I will tell you that it is possible to eradicate PA. The older a patient gets, and the number of exacerbations they have play a role in the ability to eradicate it, but it is possible. Please let us know what you hear from the doctor! I'll keep my fingers crossed that whatever this little trouble-making bug is, it will be easy to get rid of.
 
T

TonyaH

Guest
I there,
I just wanted to let you know I'm thinking of you. I will be in your shoes on Friday and was also there last November. It's so hard to wait for cultures to grow out.

I'm not going to tell you not to worry because that's just silly. But I will tell you that it is possible to eradicate PA. The older a patient gets, and the number of exacerbations they have play a role in the ability to eradicate it, but it is possible. Please let us know what you hear from the doctor! I'll keep my fingers crossed that whatever this little trouble-making bug is, it will be easy to get rid of.
 
T

TonyaH

Guest
I there,
I just wanted to let you know I'm thinking of you. I will be in your shoes on Friday and was also there last November. It's so hard to wait for cultures to grow out.

I'm not going to tell you not to worry because that's just silly. But I will tell you that it is possible to eradicate PA. The older a patient gets, and the number of exacerbations they have play a role in the ability to eradicate it, but it is possible. Please let us know what you hear from the doctor! I'll keep my fingers crossed that whatever this little trouble-making bug is, it will be easy to get rid of.
 
T

TonyaH

Guest
I there,
<br />I just wanted to let you know I'm thinking of you. I will be in your shoes on Friday and was also there last November. It's so hard to wait for cultures to grow out.
<br />
<br />I'm not going to tell you not to worry because that's just silly. But I will tell you that it is possible to eradicate PA. The older a patient gets, and the number of exacerbations they have play a role in the ability to eradicate it, but it is possible. Please let us know what you hear from the doctor! I'll keep my fingers crossed that whatever this little trouble-making bug is, it will be easy to get rid of.
 
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