Pseudomonas

S

shimmereestar

New member
Megan...My little one cultured it at 20 months. We started oral Cipro and inhaled Tobi. She did get really bad diarhea from it...so bad that we put in a PICC and did IV cipro and Tobi instead. We have a follow up next week, and that's when we will do another sputum culture. I'm not going to lie, it was really tough for me, but it really didn't seem to phase her a bit.

Angela... The masks have elastic on it, so he won't actually have to hold it. Lots of books, puzzles, and flashcards. Turn on a cartoon for him. My Ellie's favorite is her fridge DJ radio that sings or a puppet show<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

shimmereestar

New member
Megan...My little one cultured it at 20 months. We started oral Cipro and inhaled Tobi. She did get really bad diarhea from it...so bad that we put in a PICC and did IV cipro and Tobi instead. We have a follow up next week, and that's when we will do another sputum culture. I'm not going to lie, it was really tough for me, but it really didn't seem to phase her a bit.

Angela... The masks have elastic on it, so he won't actually have to hold it. Lots of books, puzzles, and flashcards. Turn on a cartoon for him. My Ellie's favorite is her fridge DJ radio that sings or a puppet show<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

shimmereestar

New member
Megan...My little one cultured it at 20 months. We started oral Cipro and inhaled Tobi. She did get really bad diarhea from it...so bad that we put in a PICC and did IV cipro and Tobi instead. We have a follow up next week, and that's when we will do another sputum culture. I'm not going to lie, it was really tough for me, but it really didn't seem to phase her a bit.

Angela... The masks have elastic on it, so he won't actually have to hold it. Lots of books, puzzles, and flashcards. Turn on a cartoon for him. My Ellie's favorite is her fridge DJ radio that sings or a puppet show<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

shimmereestar

New member
Megan...My little one cultured it at 20 months. We started oral Cipro and inhaled Tobi. She did get really bad diarhea from it...so bad that we put in a PICC and did IV cipro and Tobi instead. We have a follow up next week, and that's when we will do another sputum culture. I'm not going to lie, it was really tough for me, but it really didn't seem to phase her a bit.

Angela... The masks have elastic on it, so he won't actually have to hold it. Lots of books, puzzles, and flashcards. Turn on a cartoon for him. My Ellie's favorite is her fridge DJ radio that sings or a puppet show<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

shimmereestar

New member
<br />Megan...My little one cultured it at 20 months. We started oral Cipro and inhaled Tobi. She did get really bad diarhea from it...so bad that we put in a PICC and did IV cipro and Tobi instead. We have a follow up next week, and that's when we will do another sputum culture. I'm not going to lie, it was really tough for me, but it really didn't seem to phase her a bit.
<br />
<br />Angela... The masks have elastic on it, so he won't actually have to hold it. Lots of books, puzzles, and flashcards. Turn on a cartoon for him. My Ellie's favorite is her fridge DJ radio that sings or a puppet show<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mbrandazzo

New member
Hi,

Thank you for everyone's response... We are trying to stay positive about it, and I don't think it has colonized completely, but his nurse said they can't be sure.

We are just hoping that his next culture will show it to be GONE, and the following two after that as well. THey said it takes three clear cultures for them to determine if we eraticated it.

Anyway, we did the Tobi last night for the first time, and as long as we had his favorite show on he didn't seem to mind sitting for an extra 15 minutes.

Has anyone's child not gotten rid of it, and what do you do in that case? Do they have to stay on Tobi forever? Just wondering?
THanks again,
Megan
 
M

mbrandazzo

New member
Hi,

Thank you for everyone's response... We are trying to stay positive about it, and I don't think it has colonized completely, but his nurse said they can't be sure.

We are just hoping that his next culture will show it to be GONE, and the following two after that as well. THey said it takes three clear cultures for them to determine if we eraticated it.

Anyway, we did the Tobi last night for the first time, and as long as we had his favorite show on he didn't seem to mind sitting for an extra 15 minutes.

Has anyone's child not gotten rid of it, and what do you do in that case? Do they have to stay on Tobi forever? Just wondering?
THanks again,
Megan
 
M

mbrandazzo

New member
Hi,

Thank you for everyone's response... We are trying to stay positive about it, and I don't think it has colonized completely, but his nurse said they can't be sure.

We are just hoping that his next culture will show it to be GONE, and the following two after that as well. THey said it takes three clear cultures for them to determine if we eraticated it.

Anyway, we did the Tobi last night for the first time, and as long as we had his favorite show on he didn't seem to mind sitting for an extra 15 minutes.

Has anyone's child not gotten rid of it, and what do you do in that case? Do they have to stay on Tobi forever? Just wondering?
THanks again,
Megan
 
M

mbrandazzo

New member
Hi,

Thank you for everyone's response... We are trying to stay positive about it, and I don't think it has colonized completely, but his nurse said they can't be sure.

We are just hoping that his next culture will show it to be GONE, and the following two after that as well. THey said it takes three clear cultures for them to determine if we eraticated it.

Anyway, we did the Tobi last night for the first time, and as long as we had his favorite show on he didn't seem to mind sitting for an extra 15 minutes.

Has anyone's child not gotten rid of it, and what do you do in that case? Do they have to stay on Tobi forever? Just wondering?
THanks again,
Megan
 
M

mbrandazzo

New member
Hi,
<br />
<br />Thank you for everyone's response... We are trying to stay positive about it, and I don't think it has colonized completely, but his nurse said they can't be sure.
<br />
<br />We are just hoping that his next culture will show it to be GONE, and the following two after that as well. THey said it takes three clear cultures for them to determine if we eraticated it.
<br />
<br />Anyway, we did the Tobi last night for the first time, and as long as we had his favorite show on he didn't seem to mind sitting for an extra 15 minutes.
<br />
<br />Has anyone's child not gotten rid of it, and what do you do in that case? Do they have to stay on Tobi forever? Just wondering?
<br />THanks again,
<br />Megan
 
R

Ratatosk

Administrator
Staff member
DS cultured nonmucoid pseudo when he was 3 months old and was put on tobi. Think we were told after a certain number of clear cultures that he could be off of it. Unfortunately, he'd be clear and then it'd pop up again.

So he's pretty much been on it ever other month since then. Guess it's pretty much second nature now.

He's old enough to play video games while he does his vest and his nebs and he only gets to play video games during treatment times.
 
R

Ratatosk

Administrator
Staff member
DS cultured nonmucoid pseudo when he was 3 months old and was put on tobi. Think we were told after a certain number of clear cultures that he could be off of it. Unfortunately, he'd be clear and then it'd pop up again.

So he's pretty much been on it ever other month since then. Guess it's pretty much second nature now.

He's old enough to play video games while he does his vest and his nebs and he only gets to play video games during treatment times.
 
R

Ratatosk

Administrator
Staff member
DS cultured nonmucoid pseudo when he was 3 months old and was put on tobi. Think we were told after a certain number of clear cultures that he could be off of it. Unfortunately, he'd be clear and then it'd pop up again.

So he's pretty much been on it ever other month since then. Guess it's pretty much second nature now.

He's old enough to play video games while he does his vest and his nebs and he only gets to play video games during treatment times.
 
R

Ratatosk

Administrator
Staff member
DS cultured nonmucoid pseudo when he was 3 months old and was put on tobi. Think we were told after a certain number of clear cultures that he could be off of it. Unfortunately, he'd be clear and then it'd pop up again.

So he's pretty much been on it ever other month since then. Guess it's pretty much second nature now.

He's old enough to play video games while he does his vest and his nebs and he only gets to play video games during treatment times.
 
R

Ratatosk

Administrator
Staff member
DS cultured nonmucoid pseudo when he was 3 months old and was put on tobi. Think we were told after a certain number of clear cultures that he could be off of it. Unfortunately, he'd be clear and then it'd pop up again.
<br />
<br />So he's pretty much been on it ever other month since then. Guess it's pretty much second nature now.
<br />
<br />He's old enough to play video games while he does his vest and his nebs and he only gets to play video games during treatment times.
 
I

izemmom

New member
Emily cultured psuedo at her very first clinic visit, about 2 weeks after leaving the NICU. She was about 6 weeks old. Yes, it did feel like getting the diagnosis all over again.

She was immediately put on TOBI, and we did that, 28 days on, 28 days off for about 9 months. Then, SHE HAD A CLEAR CULTURE! I'll never forget that phone call! We did two more cycles of TOBI after the clear culture, and we've never needed to do it again (yet) since she's stayed clear.

I remember our pulmonologist saying to me, "We are going to knock psuedo on it's ass and get rid of it!" And so far, she was right!

I still hold my breath until we get the culture results. I always have psuedo in the back of my mind, but so far, so good.
 
I

izemmom

New member
Emily cultured psuedo at her very first clinic visit, about 2 weeks after leaving the NICU. She was about 6 weeks old. Yes, it did feel like getting the diagnosis all over again.

She was immediately put on TOBI, and we did that, 28 days on, 28 days off for about 9 months. Then, SHE HAD A CLEAR CULTURE! I'll never forget that phone call! We did two more cycles of TOBI after the clear culture, and we've never needed to do it again (yet) since she's stayed clear.

I remember our pulmonologist saying to me, "We are going to knock psuedo on it's ass and get rid of it!" And so far, she was right!

I still hold my breath until we get the culture results. I always have psuedo in the back of my mind, but so far, so good.
 
I

izemmom

New member
Emily cultured psuedo at her very first clinic visit, about 2 weeks after leaving the NICU. She was about 6 weeks old. Yes, it did feel like getting the diagnosis all over again.

She was immediately put on TOBI, and we did that, 28 days on, 28 days off for about 9 months. Then, SHE HAD A CLEAR CULTURE! I'll never forget that phone call! We did two more cycles of TOBI after the clear culture, and we've never needed to do it again (yet) since she's stayed clear.

I remember our pulmonologist saying to me, "We are going to knock psuedo on it's ass and get rid of it!" And so far, she was right!

I still hold my breath until we get the culture results. I always have psuedo in the back of my mind, but so far, so good.
 
I

izemmom

New member
Emily cultured psuedo at her very first clinic visit, about 2 weeks after leaving the NICU. She was about 6 weeks old. Yes, it did feel like getting the diagnosis all over again.

She was immediately put on TOBI, and we did that, 28 days on, 28 days off for about 9 months. Then, SHE HAD A CLEAR CULTURE! I'll never forget that phone call! We did two more cycles of TOBI after the clear culture, and we've never needed to do it again (yet) since she's stayed clear.

I remember our pulmonologist saying to me, "We are going to knock psuedo on it's ass and get rid of it!" And so far, she was right!

I still hold my breath until we get the culture results. I always have psuedo in the back of my mind, but so far, so good.
 
I

izemmom

New member
Emily cultured psuedo at her very first clinic visit, about 2 weeks after leaving the NICU. She was about 6 weeks old. Yes, it did feel like getting the diagnosis all over again.
<br />
<br />She was immediately put on TOBI, and we did that, 28 days on, 28 days off for about 9 months. Then, SHE HAD A CLEAR CULTURE! I'll never forget that phone call! We did two more cycles of TOBI after the clear culture, and we've never needed to do it again (yet) since she's stayed clear.
<br />
<br />I remember our pulmonologist saying to me, "We are going to knock psuedo on it's ass and get rid of it!" And so far, she was right!
<br />
<br />I still hold my breath until we get the culture results. I always have psuedo in the back of my mind, but so far, so good.
 
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