hi people. my son is ten months old and was diagnosed with cf whwn he was two weeks old. He has been in hospital three times since he was born and the last time he had pseudomonas. Every day is a struggle trying to keep it all together, everytime he is taken into hospital is disheartening. I have a great partner but sometimes i feel so alone. I'm scared for him. I don't know much about pseudomonas and it would be graet if anybody had some firts hand knowledge of it ta<img src="i/expressions/face-icon-small-sad.gif" border="0">
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mums fear
- Thread starter johnsmum
- Start date
hi people. my son is ten months old and was diagnosed with cf whwn he was two weeks old. He has been in hospital three times since he was born and the last time he had pseudomonas. Every day is a struggle trying to keep it all together, everytime he is taken into hospital is disheartening. I have a great partner but sometimes i feel so alone. I'm scared for him. I don't know much about pseudomonas and it would be graet if anybody had some firts hand knowledge of it ta<img src="i/expressions/face-icon-small-sad.gif" border="0">
hi people. my son is ten months old and was diagnosed with cf whwn he was two weeks old. He has been in hospital three times since he was born and the last time he had pseudomonas. Every day is a struggle trying to keep it all together, everytime he is taken into hospital is disheartening. I have a great partner but sometimes i feel so alone. I'm scared for him. I don't know much about pseudomonas and it would be graet if anybody had some firts hand knowledge of it ta<img src="i/expressions/face-icon-small-sad.gif" border="0">
M
Mommafirst
Guest
I don't have any first hand knowledge, I'm sure you'll get lots of input. I'm just posting to welcome you to the site. My daughter is also 10 months old, was diagnosed at 5 months. I'm so sorry that your first 10 months have been so tough, we've been pretty lucky, but seem to always be just moments away from it all falling apart.
M
Mommafirst
Guest
I don't have any first hand knowledge, I'm sure you'll get lots of input. I'm just posting to welcome you to the site. My daughter is also 10 months old, was diagnosed at 5 months. I'm so sorry that your first 10 months have been so tough, we've been pretty lucky, but seem to always be just moments away from it all falling apart.
M
Mommafirst
Guest
I don't have any first hand knowledge, I'm sure you'll get lots of input. I'm just posting to welcome you to the site. My daughter is also 10 months old, was diagnosed at 5 months. I'm so sorry that your first 10 months have been so tough, we've been pretty lucky, but seem to always be just moments away from it all falling apart.
Hi!
I'm new here too. I have a thirteen month old with CF diagnosed when she was 3 months for failure to thrive. My daughter did culture Pseudomonas at 6 months and was hospitalized for a week. We were lucky to eradicate them, so you might too. We have since had two clean cultures. We go back in Dec. and I am terrified of what they will say. Good luck. I am mainly a lurker here, but these people have really made me feel better at some pretty low points. I hope things will get easier for you!
Zoe
mom to Kate wCF
I'm new here too. I have a thirteen month old with CF diagnosed when she was 3 months for failure to thrive. My daughter did culture Pseudomonas at 6 months and was hospitalized for a week. We were lucky to eradicate them, so you might too. We have since had two clean cultures. We go back in Dec. and I am terrified of what they will say. Good luck. I am mainly a lurker here, but these people have really made me feel better at some pretty low points. I hope things will get easier for you!
Zoe
mom to Kate wCF
Hi!
I'm new here too. I have a thirteen month old with CF diagnosed when she was 3 months for failure to thrive. My daughter did culture Pseudomonas at 6 months and was hospitalized for a week. We were lucky to eradicate them, so you might too. We have since had two clean cultures. We go back in Dec. and I am terrified of what they will say. Good luck. I am mainly a lurker here, but these people have really made me feel better at some pretty low points. I hope things will get easier for you!
Zoe
mom to Kate wCF
I'm new here too. I have a thirteen month old with CF diagnosed when she was 3 months for failure to thrive. My daughter did culture Pseudomonas at 6 months and was hospitalized for a week. We were lucky to eradicate them, so you might too. We have since had two clean cultures. We go back in Dec. and I am terrified of what they will say. Good luck. I am mainly a lurker here, but these people have really made me feel better at some pretty low points. I hope things will get easier for you!
Zoe
mom to Kate wCF
Hi!
I'm new here too. I have a thirteen month old with CF diagnosed when she was 3 months for failure to thrive. My daughter did culture Pseudomonas at 6 months and was hospitalized for a week. We were lucky to eradicate them, so you might too. We have since had two clean cultures. We go back in Dec. and I am terrified of what they will say. Good luck. I am mainly a lurker here, but these people have really made me feel better at some pretty low points. I hope things will get easier for you!
Zoe
mom to Kate wCF
I'm new here too. I have a thirteen month old with CF diagnosed when she was 3 months for failure to thrive. My daughter did culture Pseudomonas at 6 months and was hospitalized for a week. We were lucky to eradicate them, so you might too. We have since had two clean cultures. We go back in Dec. and I am terrified of what they will say. Good luck. I am mainly a lurker here, but these people have really made me feel better at some pretty low points. I hope things will get easier for you!
Zoe
mom to Kate wCF
<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/pseudomonas.htm
">http://www3.nbnet.nb.ca/normap/pseudomonas.htm
</a>
This site has alot of info and links on pseudomonas.
My daughter was about 7 when she cultured it, I cried in the docs room when he told me as i had been dreading it.
But since that time she has only ever cultured staph.
So fingers crossed for your bub <img src="i/expressions/face-icon-small-smile.gif" border="0">
">http://www3.nbnet.nb.ca/normap/pseudomonas.htm
</a>
This site has alot of info and links on pseudomonas.
My daughter was about 7 when she cultured it, I cried in the docs room when he told me as i had been dreading it.
But since that time she has only ever cultured staph.
So fingers crossed for your bub <img src="i/expressions/face-icon-small-smile.gif" border="0">
<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/pseudomonas.htm
">http://www3.nbnet.nb.ca/normap/pseudomonas.htm
</a>
This site has alot of info and links on pseudomonas.
My daughter was about 7 when she cultured it, I cried in the docs room when he told me as i had been dreading it.
But since that time she has only ever cultured staph.
So fingers crossed for your bub <img src="i/expressions/face-icon-small-smile.gif" border="0">
">http://www3.nbnet.nb.ca/normap/pseudomonas.htm
</a>
This site has alot of info and links on pseudomonas.
My daughter was about 7 when she cultured it, I cried in the docs room when he told me as i had been dreading it.
But since that time she has only ever cultured staph.
So fingers crossed for your bub <img src="i/expressions/face-icon-small-smile.gif" border="0">
<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/pseudomonas.htm
">http://www3.nbnet.nb.ca/normap/pseudomonas.htm
</a>
This site has alot of info and links on pseudomonas.
My daughter was about 7 when she cultured it, I cried in the docs room when he told me as i had been dreading it.
But since that time she has only ever cultured staph.
So fingers crossed for your bub <img src="i/expressions/face-icon-small-smile.gif" border="0">
">http://www3.nbnet.nb.ca/normap/pseudomonas.htm
</a>
This site has alot of info and links on pseudomonas.
My daughter was about 7 when she cultured it, I cried in the docs room when he told me as i had been dreading it.
But since that time she has only ever cultured staph.
So fingers crossed for your bub <img src="i/expressions/face-icon-small-smile.gif" border="0">
My heart goes out to you across all the miles. My son was also hospitalized 3 times his first year. Two were due to complications from being undiagnosed and the later was due to weight loss during RSV. All of them were a tremendous emotional and physical strain and hard to shake. The first year was the hardest...so much, almost too much to process. The next year was healing and absorbing year. He got much stronger and grew very well (on all levels). He showed us he is here for a reason and is strong as hell. We also learned alot about how to help him (and our family) stay healthy. He also culture pseudomonas at 15 months old. We did a round of inhaled TOBI and he just celebrated his 3rd clear culture! We initially freaked out and then learned that if treated right away most PA cultures go away. Of course it can show up from time to time but agressive treatment is the way to go with PA. We also started inhaled GSH treatments after he cultured PA and feel this has done alot to help his lung stay clear this past year. He is 2 1/2 now and doing well.
Just know first you are not alone in feeling alone sometimes. Even with a partner/husband who has gone through it with you, it can feel like you are alone in your pain/guilt. We have each worked through it in different ways. It all caught up to me last spring (I think I had to do the stoic mom thing the first 20 months) and I have benefitted from seeing a grief counsleor. I only go now when I feel I need to or something comes up that kind of cycles. Just imagine all of us parents out here surrounding you with positive energy and a deep understanding of where you are...and also the hope we all hold in our hearts that some day the progressive nature of CF will be stopped!
You are a great mum with a huge heart, always doing your very best for your family.
Much support,
Jody
Just know first you are not alone in feeling alone sometimes. Even with a partner/husband who has gone through it with you, it can feel like you are alone in your pain/guilt. We have each worked through it in different ways. It all caught up to me last spring (I think I had to do the stoic mom thing the first 20 months) and I have benefitted from seeing a grief counsleor. I only go now when I feel I need to or something comes up that kind of cycles. Just imagine all of us parents out here surrounding you with positive energy and a deep understanding of where you are...and also the hope we all hold in our hearts that some day the progressive nature of CF will be stopped!
You are a great mum with a huge heart, always doing your very best for your family.
Much support,
Jody
My heart goes out to you across all the miles. My son was also hospitalized 3 times his first year. Two were due to complications from being undiagnosed and the later was due to weight loss during RSV. All of them were a tremendous emotional and physical strain and hard to shake. The first year was the hardest...so much, almost too much to process. The next year was healing and absorbing year. He got much stronger and grew very well (on all levels). He showed us he is here for a reason and is strong as hell. We also learned alot about how to help him (and our family) stay healthy. He also culture pseudomonas at 15 months old. We did a round of inhaled TOBI and he just celebrated his 3rd clear culture! We initially freaked out and then learned that if treated right away most PA cultures go away. Of course it can show up from time to time but agressive treatment is the way to go with PA. We also started inhaled GSH treatments after he cultured PA and feel this has done alot to help his lung stay clear this past year. He is 2 1/2 now and doing well.
Just know first you are not alone in feeling alone sometimes. Even with a partner/husband who has gone through it with you, it can feel like you are alone in your pain/guilt. We have each worked through it in different ways. It all caught up to me last spring (I think I had to do the stoic mom thing the first 20 months) and I have benefitted from seeing a grief counsleor. I only go now when I feel I need to or something comes up that kind of cycles. Just imagine all of us parents out here surrounding you with positive energy and a deep understanding of where you are...and also the hope we all hold in our hearts that some day the progressive nature of CF will be stopped!
You are a great mum with a huge heart, always doing your very best for your family.
Much support,
Jody
Just know first you are not alone in feeling alone sometimes. Even with a partner/husband who has gone through it with you, it can feel like you are alone in your pain/guilt. We have each worked through it in different ways. It all caught up to me last spring (I think I had to do the stoic mom thing the first 20 months) and I have benefitted from seeing a grief counsleor. I only go now when I feel I need to or something comes up that kind of cycles. Just imagine all of us parents out here surrounding you with positive energy and a deep understanding of where you are...and also the hope we all hold in our hearts that some day the progressive nature of CF will be stopped!
You are a great mum with a huge heart, always doing your very best for your family.
Much support,
Jody
My heart goes out to you across all the miles. My son was also hospitalized 3 times his first year. Two were due to complications from being undiagnosed and the later was due to weight loss during RSV. All of them were a tremendous emotional and physical strain and hard to shake. The first year was the hardest...so much, almost too much to process. The next year was healing and absorbing year. He got much stronger and grew very well (on all levels). He showed us he is here for a reason and is strong as hell. We also learned alot about how to help him (and our family) stay healthy. He also culture pseudomonas at 15 months old. We did a round of inhaled TOBI and he just celebrated his 3rd clear culture! We initially freaked out and then learned that if treated right away most PA cultures go away. Of course it can show up from time to time but agressive treatment is the way to go with PA. We also started inhaled GSH treatments after he cultured PA and feel this has done alot to help his lung stay clear this past year. He is 2 1/2 now and doing well.
Just know first you are not alone in feeling alone sometimes. Even with a partner/husband who has gone through it with you, it can feel like you are alone in your pain/guilt. We have each worked through it in different ways. It all caught up to me last spring (I think I had to do the stoic mom thing the first 20 months) and I have benefitted from seeing a grief counsleor. I only go now when I feel I need to or something comes up that kind of cycles. Just imagine all of us parents out here surrounding you with positive energy and a deep understanding of where you are...and also the hope we all hold in our hearts that some day the progressive nature of CF will be stopped!
You are a great mum with a huge heart, always doing your very best for your family.
Much support,
Jody
Just know first you are not alone in feeling alone sometimes. Even with a partner/husband who has gone through it with you, it can feel like you are alone in your pain/guilt. We have each worked through it in different ways. It all caught up to me last spring (I think I had to do the stoic mom thing the first 20 months) and I have benefitted from seeing a grief counsleor. I only go now when I feel I need to or something comes up that kind of cycles. Just imagine all of us parents out here surrounding you with positive energy and a deep understanding of where you are...and also the hope we all hold in our hearts that some day the progressive nature of CF will be stopped!
You are a great mum with a huge heart, always doing your very best for your family.
Much support,
Jody
hi guys it truly feels great to share how i feel with other parents who know what we are going through. John was at the hospital yesterday and he is keeping healthy for now, but as you know each day is a struggle i think this has changed me and i do not know who i am anymore or what i need. Cf has taken over my life. i feel its bigger than me. x
hi guys it truly feels great to share how i feel with other parents who know what we are going through. John was at the hospital yesterday and he is keeping healthy for now, but as you know each day is a struggle i think this has changed me and i do not know who i am anymore or what i need. Cf has taken over my life. i feel its bigger than me. x
hi guys it truly feels great to share how i feel with other parents who know what we are going through. John was at the hospital yesterday and he is keeping healthy for now, but as you know each day is a struggle i think this has changed me and i do not know who i am anymore or what i need. Cf has taken over my life. i feel its bigger than me. x
Having a baby, during that first year seems to take over your like. I also know that having one that isn't welltakes an even bigger toll. Babies, and I gave raised three, now 24, 21 and 12, can't tell you what's wrong and thus they are often sicker before we figure out somethings wrong. Can't tell you the number of times I took them in for ears or colds to have the doctor tell me they are ok and two days later they are back in and needing antibiotics (that mother second sense).
You have alot on your plate and you will have to find sapce to take care of yourself. Yeah, sure....fine time? I became an advid reader of silly romance novels, they made me smile and didn't require alot from me. Whenever I could I did needlepoint (yeah that was seldom, so get something easy). I also took breaks from housework, let's say I gave up the need that it all had to be done today right now this minute. I was fortunate enough for awhile to be able to pay someone to clean once a week. When I couldn't afford it, I simply did the best I coud. Take those kind offers of can I do anything to help in to reality....let good friends fix a meal, cleanm a room, do a load of laundry. Watch junk TV. Even today, with Josh's new diagnosis, things still get overwhelming. I'm in graduate school and I can only do what I can do. If the bathrooms are clean and the dishes are done, and I can find a place to sit, than its good.
Hope this helps.
You have alot on your plate and you will have to find sapce to take care of yourself. Yeah, sure....fine time? I became an advid reader of silly romance novels, they made me smile and didn't require alot from me. Whenever I could I did needlepoint (yeah that was seldom, so get something easy). I also took breaks from housework, let's say I gave up the need that it all had to be done today right now this minute. I was fortunate enough for awhile to be able to pay someone to clean once a week. When I couldn't afford it, I simply did the best I coud. Take those kind offers of can I do anything to help in to reality....let good friends fix a meal, cleanm a room, do a load of laundry. Watch junk TV. Even today, with Josh's new diagnosis, things still get overwhelming. I'm in graduate school and I can only do what I can do. If the bathrooms are clean and the dishes are done, and I can find a place to sit, than its good.
Hope this helps.
Having a baby, during that first year seems to take over your like. I also know that having one that isn't welltakes an even bigger toll. Babies, and I gave raised three, now 24, 21 and 12, can't tell you what's wrong and thus they are often sicker before we figure out somethings wrong. Can't tell you the number of times I took them in for ears or colds to have the doctor tell me they are ok and two days later they are back in and needing antibiotics (that mother second sense).
You have alot on your plate and you will have to find sapce to take care of yourself. Yeah, sure....fine time? I became an advid reader of silly romance novels, they made me smile and didn't require alot from me. Whenever I could I did needlepoint (yeah that was seldom, so get something easy). I also took breaks from housework, let's say I gave up the need that it all had to be done today right now this minute. I was fortunate enough for awhile to be able to pay someone to clean once a week. When I couldn't afford it, I simply did the best I coud. Take those kind offers of can I do anything to help in to reality....let good friends fix a meal, cleanm a room, do a load of laundry. Watch junk TV. Even today, with Josh's new diagnosis, things still get overwhelming. I'm in graduate school and I can only do what I can do. If the bathrooms are clean and the dishes are done, and I can find a place to sit, than its good.
Hope this helps.
You have alot on your plate and you will have to find sapce to take care of yourself. Yeah, sure....fine time? I became an advid reader of silly romance novels, they made me smile and didn't require alot from me. Whenever I could I did needlepoint (yeah that was seldom, so get something easy). I also took breaks from housework, let's say I gave up the need that it all had to be done today right now this minute. I was fortunate enough for awhile to be able to pay someone to clean once a week. When I couldn't afford it, I simply did the best I coud. Take those kind offers of can I do anything to help in to reality....let good friends fix a meal, cleanm a room, do a load of laundry. Watch junk TV. Even today, with Josh's new diagnosis, things still get overwhelming. I'm in graduate school and I can only do what I can do. If the bathrooms are clean and the dishes are done, and I can find a place to sit, than its good.
Hope this helps.