Just cultured Nonmucoid pseudo for the first time

bet10 · Oct 30, 2009

Hi, little Tom had his follow-up clinic visit from his hospital stay of last week and his culture came back positive for nonmucoid pseudo - sigh. It has been a rough week for the little man, but he seems really well, except for his very rattly sounding throat. I am not doing so great, I am in shock that we are facing this at only 5 months old, but I know it is the nature of CF, I can't help but feel we did something wrong, despite being so vigilant and careful with everything. Anyway, in my state of shock yesterday at the clinic, I forgot to get the exact order of nebs, the doctor said she would write it down but she left before we got it. And I rang this morning, but could only leave a message. So can anyone help me out?? We are now doing Abuterol, Pulmozyme, Pulmicort and Tobi. Is there a specific order? Seems strange that only a week ago we were doing Abuterol only, now we are going the whole nine yards, i feel so sad for him.

Also, the doctor said we had two options, oral - cypro or IV for 2 weeks in hospital, but she said lets start with home oral first. I just want to do what is best and said I will go with her decision, but now I am thinking is this aggressive enough? What has been your experiences in getting rid of this terrible bacteria? We are due for another culture in 6 weeks, and she said if it is not clear then we will admit him - but I am thinking why wait??

In your experiences, now that he has cultured nonmucoid pseudo, does this mean things will go downhill for him now? I am just so scared, almost feels worse than diagnosis in so many ways.... urghhhhh! I am trying to keep positive and looking at this as another bump in the road, but it is hard. No one else but you guys know how this feels, as much as family and friends are supportive, they do struggle to understand the enormity of all this - so thanks for being here. I have already gained so much knowledge from so many of you. x

Natalie, mom to Tom w/cf born 5/16/09 DFF508, and Jack, 3 (no cf)

bet10 · Oct 30, 2009

Hi, little Tom had his follow-up clinic visit from his hospital stay of last week and his culture came back positive for nonmucoid pseudo - sigh. It has been a rough week for the little man, but he seems really well, except for his very rattly sounding throat. I am not doing so great, I am in shock that we are facing this at only 5 months old, but I know it is the nature of CF, I can't help but feel we did something wrong, despite being so vigilant and careful with everything. Anyway, in my state of shock yesterday at the clinic, I forgot to get the exact order of nebs, the doctor said she would write it down but she left before we got it. And I rang this morning, but could only leave a message. So can anyone help me out?? We are now doing Abuterol, Pulmozyme, Pulmicort and Tobi. Is there a specific order? Seems strange that only a week ago we were doing Abuterol only, now we are going the whole nine yards, i feel so sad for him.

Also, the doctor said we had two options, oral - cypro or IV for 2 weeks in hospital, but she said lets start with home oral first. I just want to do what is best and said I will go with her decision, but now I am thinking is this aggressive enough? What has been your experiences in getting rid of this terrible bacteria? We are due for another culture in 6 weeks, and she said if it is not clear then we will admit him - but I am thinking why wait??

In your experiences, now that he has cultured nonmucoid pseudo, does this mean things will go downhill for him now? I am just so scared, almost feels worse than diagnosis in so many ways.... urghhhhh! I am trying to keep positive and looking at this as another bump in the road, but it is hard. No one else but you guys know how this feels, as much as family and friends are supportive, they do struggle to understand the enormity of all this - so thanks for being here. I have already gained so much knowledge from so many of you. x

Natalie, mom to Tom w/cf born 5/16/09 DFF508, and Jack, 3 (no cf)

bet10 · Oct 30, 2009

Hi, little Tom had his follow-up clinic visit from his hospital stay of last week and his culture came back positive for nonmucoid pseudo - sigh. It has been a rough week for the little man, but he seems really well, except for his very rattly sounding throat. I am not doing so great, I am in shock that we are facing this at only 5 months old, but I know it is the nature of CF, I can't help but feel we did something wrong, despite being so vigilant and careful with everything. Anyway, in my state of shock yesterday at the clinic, I forgot to get the exact order of nebs, the doctor said she would write it down but she left before we got it. And I rang this morning, but could only leave a message. So can anyone help me out?? We are now doing Abuterol, Pulmozyme, Pulmicort and Tobi. Is there a specific order? Seems strange that only a week ago we were doing Abuterol only, now we are going the whole nine yards, i feel so sad for him.

Also, the doctor said we had two options, oral - cypro or IV for 2 weeks in hospital, but she said lets start with home oral first. I just want to do what is best and said I will go with her decision, but now I am thinking is this aggressive enough? What has been your experiences in getting rid of this terrible bacteria? We are due for another culture in 6 weeks, and she said if it is not clear then we will admit him - but I am thinking why wait??

In your experiences, now that he has cultured nonmucoid pseudo, does this mean things will go downhill for him now? I am just so scared, almost feels worse than diagnosis in so many ways.... urghhhhh! I am trying to keep positive and looking at this as another bump in the road, but it is hard. No one else but you guys know how this feels, as much as family and friends are supportive, they do struggle to understand the enormity of all this - so thanks for being here. I have already gained so much knowledge from so many of you. x

Natalie, mom to Tom w/cf born 5/16/09 DFF508, and Jack, 3 (no cf)

bet10 · Oct 30, 2009

Hi, little Tom had his follow-up clinic visit from his hospital stay of last week and his culture came back positive for nonmucoid pseudo - sigh. It has been a rough week for the little man, but he seems really well, except for his very rattly sounding throat. I am not doing so great, I am in shock that we are facing this at only 5 months old, but I know it is the nature of CF, I can't help but feel we did something wrong, despite being so vigilant and careful with everything. Anyway, in my state of shock yesterday at the clinic, I forgot to get the exact order of nebs, the doctor said she would write it down but she left before we got it. And I rang this morning, but could only leave a message. So can anyone help me out?? We are now doing Abuterol, Pulmozyme, Pulmicort and Tobi. Is there a specific order? Seems strange that only a week ago we were doing Abuterol only, now we are going the whole nine yards, i feel so sad for him.

Also, the doctor said we had two options, oral - cypro or IV for 2 weeks in hospital, but she said lets start with home oral first. I just want to do what is best and said I will go with her decision, but now I am thinking is this aggressive enough? What has been your experiences in getting rid of this terrible bacteria? We are due for another culture in 6 weeks, and she said if it is not clear then we will admit him - but I am thinking why wait??

In your experiences, now that he has cultured nonmucoid pseudo, does this mean things will go downhill for him now? I am just so scared, almost feels worse than diagnosis in so many ways.... urghhhhh! I am trying to keep positive and looking at this as another bump in the road, but it is hard. No one else but you guys know how this feels, as much as family and friends are supportive, they do struggle to understand the enormity of all this - so thanks for being here. I have already gained so much knowledge from so many of you. x

Natalie, mom to Tom w/cf born 5/16/09 DFF508, and Jack, 3 (no cf)

bet10 · Oct 30, 2009

Hi, little Tom had his follow-up clinic visit from his hospital stay of last week and his culture came back positive for nonmucoid pseudo - sigh. It has been a rough week for the little man, but he seems really well, except for his very rattly sounding throat. I am not doing so great, I am in shock that we are facing this at only 5 months old, but I know it is the nature of CF, I can't help but feel we did something wrong, despite being so vigilant and careful with everything. Anyway, in my state of shock yesterday at the clinic, I forgot to get the exact order of nebs, the doctor said she would write it down but she left before we got it. And I rang this morning, but could only leave a message. So can anyone help me out?? We are now doing Abuterol, Pulmozyme, Pulmicort and Tobi. Is there a specific order? Seems strange that only a week ago we were doing Abuterol only, now we are going the whole nine yards, i feel so sad for him.
 
 Also, the doctor said we had two options, oral - cypro or IV for 2 weeks in hospital, but she said lets start with home oral first. I just want to do what is best and said I will go with her decision, but now I am thinking is this aggressive enough? What has been your experiences in getting rid of this terrible bacteria? We are due for another culture in 6 weeks, and she said if it is not clear then we will admit him - but I am thinking why wait??
 
 In your experiences, now that he has cultured nonmucoid pseudo, does this mean things will go downhill for him now? I am just so scared, almost feels worse than diagnosis in so many ways.... urghhhhh! I am trying to keep positive and looking at this as another bump in the road, but it is hard. No one else but you guys know how this feels, as much as family and friends are supportive, they do struggle to understand the enormity of all this - so thanks for being here. I have already gained so much knowledge from so many of you. x
 
 
 Natalie, mom to Tom w/cf born 5/16/09 DFF508, and Jack, 3 (no cf)

Ratatosk · Oct 30, 2009

DS was 3 months old when he cultured it. Was pretty much a kick in the gut feeling, because it really brought home the reality that he did in fact have CF. DS was put on tobi nebs. We were already doing 4 cpt treatments a day with albuterol/atrovent nebs. DS isn't on pulmicort, but we do albuterol atrovent, pulmozyme and then tobi last -- abx last so it stays in the lungs.

When DS cultured it, we were in shock because he didn't have any symptoms. We assumed his culture results would come back normal because he was doing so well. Previous month he'd had a horrible cough due to culturing enterbactor choclae, something we're pretty sure he came home from the NICU with.

Ratatosk · Oct 30, 2009

DS was 3 months old when he cultured it. Was pretty much a kick in the gut feeling, because it really brought home the reality that he did in fact have CF. DS was put on tobi nebs. We were already doing 4 cpt treatments a day with albuterol/atrovent nebs. DS isn't on pulmicort, but we do albuterol atrovent, pulmozyme and then tobi last -- abx last so it stays in the lungs.

When DS cultured it, we were in shock because he didn't have any symptoms. We assumed his culture results would come back normal because he was doing so well. Previous month he'd had a horrible cough due to culturing enterbactor choclae, something we're pretty sure he came home from the NICU with.

Ratatosk · Oct 30, 2009

DS was 3 months old when he cultured it. Was pretty much a kick in the gut feeling, because it really brought home the reality that he did in fact have CF. DS was put on tobi nebs. We were already doing 4 cpt treatments a day with albuterol/atrovent nebs. DS isn't on pulmicort, but we do albuterol atrovent, pulmozyme and then tobi last -- abx last so it stays in the lungs.

When DS cultured it, we were in shock because he didn't have any symptoms. We assumed his culture results would come back normal because he was doing so well. Previous month he'd had a horrible cough due to culturing enterbactor choclae, something we're pretty sure he came home from the NICU with.

Ratatosk · Oct 30, 2009

DS was 3 months old when he cultured it. Was pretty much a kick in the gut feeling, because it really brought home the reality that he did in fact have CF. DS was put on tobi nebs. We were already doing 4 cpt treatments a day with albuterol/atrovent nebs. DS isn't on pulmicort, but we do albuterol atrovent, pulmozyme and then tobi last -- abx last so it stays in the lungs.

When DS cultured it, we were in shock because he didn't have any symptoms. We assumed his culture results would come back normal because he was doing so well. Previous month he'd had a horrible cough due to culturing enterbactor choclae, something we're pretty sure he came home from the NICU with.

Ratatosk · Oct 30, 2009

DS was 3 months old when he cultured it. Was pretty much a kick in the gut feeling, because it really brought home the reality that he did in fact have CF. DS was put on tobi nebs. We were already doing 4 cpt treatments a day with albuterol/atrovent nebs. DS isn't on pulmicort, but we do albuterol atrovent, pulmozyme and then tobi last -- abx last so it stays in the lungs.
 
 When DS cultured it, we were in shock because he didn't have any symptoms. We assumed his culture results would come back normal because he was doing so well. Previous month he'd had a horrible cough due to culturing enterbactor choclae, something we're pretty sure he came home from the NICU with.

sdelorenzo · Oct 30, 2009

Hopefully this will just be a bump in the road. Looking back, for us that is all it was. We are so fortunate to have Tobi, so our kids don't need to be hospitalized. My son was 11 months when cultured pseudomonas the first time. It shocked me too. I was very anxious to get him into the hospital and on IV's. I was not able to convince his doctor. His doctor said research shows inhaled tobi is just as effective. So we went that route. Five years later Jack has cultured pseudomonas twice maybe three times. Each time there is at least a year and a half or two between cultures. Not too bad. My daughter is 8 and has never cultured pseudomonas only staph and her cat scan of her lungs is MUCH worse than my sons.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf

sdelorenzo · Oct 30, 2009

Hopefully this will just be a bump in the road. Looking back, for us that is all it was. We are so fortunate to have Tobi, so our kids don't need to be hospitalized. My son was 11 months when cultured pseudomonas the first time. It shocked me too. I was very anxious to get him into the hospital and on IV's. I was not able to convince his doctor. His doctor said research shows inhaled tobi is just as effective. So we went that route. Five years later Jack has cultured pseudomonas twice maybe three times. Each time there is at least a year and a half or two between cultures. Not too bad. My daughter is 8 and has never cultured pseudomonas only staph and her cat scan of her lungs is MUCH worse than my sons.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf

sdelorenzo · Oct 30, 2009

Hopefully this will just be a bump in the road. Looking back, for us that is all it was. We are so fortunate to have Tobi, so our kids don't need to be hospitalized. My son was 11 months when cultured pseudomonas the first time. It shocked me too. I was very anxious to get him into the hospital and on IV's. I was not able to convince his doctor. His doctor said research shows inhaled tobi is just as effective. So we went that route. Five years later Jack has cultured pseudomonas twice maybe three times. Each time there is at least a year and a half or two between cultures. Not too bad. My daughter is 8 and has never cultured pseudomonas only staph and her cat scan of her lungs is MUCH worse than my sons.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf

sdelorenzo · Oct 30, 2009

Hopefully this will just be a bump in the road. Looking back, for us that is all it was. We are so fortunate to have Tobi, so our kids don't need to be hospitalized. My son was 11 months when cultured pseudomonas the first time. It shocked me too. I was very anxious to get him into the hospital and on IV's. I was not able to convince his doctor. His doctor said research shows inhaled tobi is just as effective. So we went that route. Five years later Jack has cultured pseudomonas twice maybe three times. Each time there is at least a year and a half or two between cultures. Not too bad. My daughter is 8 and has never cultured pseudomonas only staph and her cat scan of her lungs is MUCH worse than my sons.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf

sdelorenzo · Oct 30, 2009

Hopefully this will just be a bump in the road. Looking back, for us that is all it was. We are so fortunate to have Tobi, so our kids don't need to be hospitalized. My son was 11 months when cultured pseudomonas the first time. It shocked me too. I was very anxious to get him into the hospital and on IV's. I was not able to convince his doctor. His doctor said research shows inhaled tobi is just as effective. So we went that route. Five years later Jack has cultured pseudomonas twice maybe three times. Each time there is at least a year and a half or two between cultures. Not too bad. My daughter is 8 and has never cultured pseudomonas only staph and her cat scan of her lungs is MUCH worse than my sons.
 Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf

folione · Oct 30, 2009

neb order is like this:
Albuterol - to open things up
chest PT next if possible to get any stuff moving and clear lung passages
Tobi - now that lungs are open/cleared it can get down in there
Pulmicort last to calm things down in there

Pulmozyme can be before or after Tobi; it does not matter; just be sure albuterol is first

Pseudomonas is unavoidable unless you move to the moon so don't feel like it was anything you did wrong. It can come and go - if you surf around the messages you'll find some folks who keep it away for years at a time and others not so lucky.

You'll also find plenty of people on both sides of the at home versus in hospital question, especially for a baby with 1st time culture. I'd be out of line to suggest that my opinions are relevant at all to how you will feel under the same circumstances I've been through.

folione · Oct 30, 2009

neb order is like this:
Albuterol - to open things up
chest PT next if possible to get any stuff moving and clear lung passages
Tobi - now that lungs are open/cleared it can get down in there
Pulmicort last to calm things down in there

Pulmozyme can be before or after Tobi; it does not matter; just be sure albuterol is first

Pseudomonas is unavoidable unless you move to the moon so don't feel like it was anything you did wrong. It can come and go - if you surf around the messages you'll find some folks who keep it away for years at a time and others not so lucky.

You'll also find plenty of people on both sides of the at home versus in hospital question, especially for a baby with 1st time culture. I'd be out of line to suggest that my opinions are relevant at all to how you will feel under the same circumstances I've been through.

folione · Oct 30, 2009

neb order is like this:
Albuterol - to open things up
chest PT next if possible to get any stuff moving and clear lung passages
Tobi - now that lungs are open/cleared it can get down in there
Pulmicort last to calm things down in there

Pulmozyme can be before or after Tobi; it does not matter; just be sure albuterol is first

Pseudomonas is unavoidable unless you move to the moon so don't feel like it was anything you did wrong. It can come and go - if you surf around the messages you'll find some folks who keep it away for years at a time and others not so lucky.

You'll also find plenty of people on both sides of the at home versus in hospital question, especially for a baby with 1st time culture. I'd be out of line to suggest that my opinions are relevant at all to how you will feel under the same circumstances I've been through.

folione · Oct 30, 2009

neb order is like this:
Albuterol - to open things up
chest PT next if possible to get any stuff moving and clear lung passages
Tobi - now that lungs are open/cleared it can get down in there
Pulmicort last to calm things down in there

Pulmozyme can be before or after Tobi; it does not matter; just be sure albuterol is first

Pseudomonas is unavoidable unless you move to the moon so don't feel like it was anything you did wrong. It can come and go - if you surf around the messages you'll find some folks who keep it away for years at a time and others not so lucky.

You'll also find plenty of people on both sides of the at home versus in hospital question, especially for a baby with 1st time culture. I'd be out of line to suggest that my opinions are relevant at all to how you will feel under the same circumstances I've been through.

folione · Oct 30, 2009

neb order is like this:
 Albuterol - to open things up
 chest PT next if possible to get any stuff moving and clear lung passages
 Tobi - now that lungs are open/cleared it can get down in there
 Pulmicort last to calm things down in there
 
 Pulmozyme can be before or after Tobi; it does not matter; just be sure albuterol is first
 
 
 Pseudomonas is unavoidable unless you move to the moon so don't feel like it was anything you did wrong. It can come and go - if you surf around the messages you'll find some folks who keep it away for years at a time and others not so lucky.
 
 You'll also find plenty of people on both sides of the at home versus in hospital question, especially for a baby with 1st time culture. I'd be out of line to suggest that my opinions are relevant at all to how you will feel under the same circumstances I've been through.

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