I'm so sad

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shimmereestar

New member
Ellie has been coughing for a couple of weeks, we went to the doc 2 weeks ago and they said she sounded great. went for a follow up on tues. and they did a deep culture and told me to call back on Fri. I called and it hadn't grown much but it looked like it was growing pseudos. they want it to grow out a bit more and we are supposed to call back Mon. for sensitivities, etc. I'm so upset, my head knows it's not my fault, they're everywhere, especially in humid ol Texas, but my heart's not listening. I'm back in that bad place again, blaming myself for everything(again my head knowing it's not my fault, but I can't help it.) She's only 8 months old and I know this is considered somewhat early, but I also know it is manageable. She's just had such a rough go so far and we were hoping to catch a break this summer. I'm hoping we won't have to go to the hospital for IVS (especially because we took her broviac line out and she's such a hard stick) but our doc is pretty aggressive, at the same time, I hope we do. All this right before I go back to work. Now I'm wondering if that's the right decision again (yet I know it is financialy) I've cried and cried and now I just need to vent a little. She's so happy, her last breathing circles were normal, and she's doing everything a baby is supposed to be doing at her age (crawling, pulling up, etc.) just with that wet cough. I just have such a heavy heart. Thanks for listening, I just needed to get it out. We'll see what Monday brings.
 
S

shimmereestar

New member
Ellie has been coughing for a couple of weeks, we went to the doc 2 weeks ago and they said she sounded great. went for a follow up on tues. and they did a deep culture and told me to call back on Fri. I called and it hadn't grown much but it looked like it was growing pseudos. they want it to grow out a bit more and we are supposed to call back Mon. for sensitivities, etc. I'm so upset, my head knows it's not my fault, they're everywhere, especially in humid ol Texas, but my heart's not listening. I'm back in that bad place again, blaming myself for everything(again my head knowing it's not my fault, but I can't help it.) She's only 8 months old and I know this is considered somewhat early, but I also know it is manageable. She's just had such a rough go so far and we were hoping to catch a break this summer. I'm hoping we won't have to go to the hospital for IVS (especially because we took her broviac line out and she's such a hard stick) but our doc is pretty aggressive, at the same time, I hope we do. All this right before I go back to work. Now I'm wondering if that's the right decision again (yet I know it is financialy) I've cried and cried and now I just need to vent a little. She's so happy, her last breathing circles were normal, and she's doing everything a baby is supposed to be doing at her age (crawling, pulling up, etc.) just with that wet cough. I just have such a heavy heart. Thanks for listening, I just needed to get it out. We'll see what Monday brings.
 
S

shimmereestar

New member
Ellie has been coughing for a couple of weeks, we went to the doc 2 weeks ago and they said she sounded great. went for a follow up on tues. and they did a deep culture and told me to call back on Fri. I called and it hadn't grown much but it looked like it was growing pseudos. they want it to grow out a bit more and we are supposed to call back Mon. for sensitivities, etc. I'm so upset, my head knows it's not my fault, they're everywhere, especially in humid ol Texas, but my heart's not listening. I'm back in that bad place again, blaming myself for everything(again my head knowing it's not my fault, but I can't help it.) She's only 8 months old and I know this is considered somewhat early, but I also know it is manageable. She's just had such a rough go so far and we were hoping to catch a break this summer. I'm hoping we won't have to go to the hospital for IVS (especially because we took her broviac line out and she's such a hard stick) but our doc is pretty aggressive, at the same time, I hope we do. All this right before I go back to work. Now I'm wondering if that's the right decision again (yet I know it is financialy) I've cried and cried and now I just need to vent a little. She's so happy, her last breathing circles were normal, and she's doing everything a baby is supposed to be doing at her age (crawling, pulling up, etc.) just with that wet cough. I just have such a heavy heart. Thanks for listening, I just needed to get it out. We'll see what Monday brings.
 
S

shimmereestar

New member
Ellie has been coughing for a couple of weeks, we went to the doc 2 weeks ago and they said she sounded great. went for a follow up on tues. and they did a deep culture and told me to call back on Fri. I called and it hadn't grown much but it looked like it was growing pseudos. they want it to grow out a bit more and we are supposed to call back Mon. for sensitivities, etc. I'm so upset, my head knows it's not my fault, they're everywhere, especially in humid ol Texas, but my heart's not listening. I'm back in that bad place again, blaming myself for everything(again my head knowing it's not my fault, but I can't help it.) She's only 8 months old and I know this is considered somewhat early, but I also know it is manageable. She's just had such a rough go so far and we were hoping to catch a break this summer. I'm hoping we won't have to go to the hospital for IVS (especially because we took her broviac line out and she's such a hard stick) but our doc is pretty aggressive, at the same time, I hope we do. All this right before I go back to work. Now I'm wondering if that's the right decision again (yet I know it is financialy) I've cried and cried and now I just need to vent a little. She's so happy, her last breathing circles were normal, and she's doing everything a baby is supposed to be doing at her age (crawling, pulling up, etc.) just with that wet cough. I just have such a heavy heart. Thanks for listening, I just needed to get it out. We'll see what Monday brings.
 
S

shimmereestar

New member
Ellie has been coughing for a couple of weeks, we went to the doc 2 weeks ago and they said she sounded great. went for a follow up on tues. and they did a deep culture and told me to call back on Fri. I called and it hadn't grown much but it looked like it was growing pseudos. they want it to grow out a bit more and we are supposed to call back Mon. for sensitivities, etc. I'm so upset, my head knows it's not my fault, they're everywhere, especially in humid ol Texas, but my heart's not listening. I'm back in that bad place again, blaming myself for everything(again my head knowing it's not my fault, but I can't help it.) She's only 8 months old and I know this is considered somewhat early, but I also know it is manageable. She's just had such a rough go so far and we were hoping to catch a break this summer. I'm hoping we won't have to go to the hospital for IVS (especially because we took her broviac line out and she's such a hard stick) but our doc is pretty aggressive, at the same time, I hope we do. All this right before I go back to work. Now I'm wondering if that's the right decision again (yet I know it is financialy) I've cried and cried and now I just need to vent a little. She's so happy, her last breathing circles were normal, and she's doing everything a baby is supposed to be doing at her age (crawling, pulling up, etc.) just with that wet cough. I just have such a heavy heart. Thanks for listening, I just needed to get it out. We'll see what Monday brings.
 
F

fourkidsmom

New member
Sarah,

Honestly, its normal to worry, but don't worry too much about it. My son cultured it at 2 months and he still tends to have more digestive issues and he has also cultured cepecia at the age of ONLY 4 yrs old (the wost strain) I would save the worry more for the cepecia and the MRSA. If she needs to go in for a clean out, just go in and get it done. You will find the older your little girl gets you will still worry but it will get a little easier. Just keep asking quesitons here and you will get alot of information.

Fourkidsmom
 
F

fourkidsmom

New member
Sarah,

Honestly, its normal to worry, but don't worry too much about it. My son cultured it at 2 months and he still tends to have more digestive issues and he has also cultured cepecia at the age of ONLY 4 yrs old (the wost strain) I would save the worry more for the cepecia and the MRSA. If she needs to go in for a clean out, just go in and get it done. You will find the older your little girl gets you will still worry but it will get a little easier. Just keep asking quesitons here and you will get alot of information.

Fourkidsmom
 
F

fourkidsmom

New member
Sarah,

Honestly, its normal to worry, but don't worry too much about it. My son cultured it at 2 months and he still tends to have more digestive issues and he has also cultured cepecia at the age of ONLY 4 yrs old (the wost strain) I would save the worry more for the cepecia and the MRSA. If she needs to go in for a clean out, just go in and get it done. You will find the older your little girl gets you will still worry but it will get a little easier. Just keep asking quesitons here and you will get alot of information.

Fourkidsmom
 
F

fourkidsmom

New member
Sarah,

Honestly, its normal to worry, but don't worry too much about it. My son cultured it at 2 months and he still tends to have more digestive issues and he has also cultured cepecia at the age of ONLY 4 yrs old (the wost strain) I would save the worry more for the cepecia and the MRSA. If she needs to go in for a clean out, just go in and get it done. You will find the older your little girl gets you will still worry but it will get a little easier. Just keep asking quesitons here and you will get alot of information.

Fourkidsmom
 
F

fourkidsmom

New member
Sarah,
<br />
<br />Honestly, its normal to worry, but don't worry too much about it. My son cultured it at 2 months and he still tends to have more digestive issues and he has also cultured cepecia at the age of ONLY 4 yrs old (the wost strain) I would save the worry more for the cepecia and the MRSA. If she needs to go in for a clean out, just go in and get it done. You will find the older your little girl gets you will still worry but it will get a little easier. Just keep asking quesitons here and you will get alot of information.
<br />
<br />Fourkidsmom
 
K

ktsmom

New member
Wow, I think that news would be enough to make anyone with your circumstances sad. That said, maybe they will try a different approach rather than IV's. I'm sorry I don't know Ellie's history but is this the first (potential) PA culture? If she has cultured it before, what did they do? When our daughter first cultured PA we were put on TOBI and Cipro for 3 months straight. Now of course we are on TOBI 28 on/off. If it is IV's, you know that will knock it in the booty quickly.

Please let us know what Monday brings. <img src="i/expressions/heart.gif" border="0">

Oh, and stop blaming yourself, although I certainly know how you feel.......
 
K

ktsmom

New member
Wow, I think that news would be enough to make anyone with your circumstances sad. That said, maybe they will try a different approach rather than IV's. I'm sorry I don't know Ellie's history but is this the first (potential) PA culture? If she has cultured it before, what did they do? When our daughter first cultured PA we were put on TOBI and Cipro for 3 months straight. Now of course we are on TOBI 28 on/off. If it is IV's, you know that will knock it in the booty quickly.

Please let us know what Monday brings. <img src="i/expressions/heart.gif" border="0">

Oh, and stop blaming yourself, although I certainly know how you feel.......
 
K

ktsmom

New member
Wow, I think that news would be enough to make anyone with your circumstances sad. That said, maybe they will try a different approach rather than IV's. I'm sorry I don't know Ellie's history but is this the first (potential) PA culture? If she has cultured it before, what did they do? When our daughter first cultured PA we were put on TOBI and Cipro for 3 months straight. Now of course we are on TOBI 28 on/off. If it is IV's, you know that will knock it in the booty quickly.

Please let us know what Monday brings. <img src="i/expressions/heart.gif" border="0">

Oh, and stop blaming yourself, although I certainly know how you feel.......
 
K

ktsmom

New member
Wow, I think that news would be enough to make anyone with your circumstances sad. That said, maybe they will try a different approach rather than IV's. I'm sorry I don't know Ellie's history but is this the first (potential) PA culture? If she has cultured it before, what did they do? When our daughter first cultured PA we were put on TOBI and Cipro for 3 months straight. Now of course we are on TOBI 28 on/off. If it is IV's, you know that will knock it in the booty quickly.

Please let us know what Monday brings. <img src="i/expressions/heart.gif" border="0">

Oh, and stop blaming yourself, although I certainly know how you feel.......
 
K

ktsmom

New member
Wow, I think that news would be enough to make anyone with your circumstances sad. That said, maybe they will try a different approach rather than IV's. I'm sorry I don't know Ellie's history but is this the first (potential) PA culture? If she has cultured it before, what did they do? When our daughter first cultured PA we were put on TOBI and Cipro for 3 months straight. Now of course we are on TOBI 28 on/off. If it is IV's, you know that will knock it in the booty quickly.
<br />
<br />Please let us know what Monday brings. <img src="i/expressions/heart.gif" border="0">
<br />
<br />Oh, and stop blaming yourself, although I certainly know how you feel.......
 
S

sdelorenzo

Guest
My son first cultured it at 12 months. It was a huge shock. I wanted IV's but the dr did cirpo and tobi. It worked. Jack has since cultured it about once a year.

My daughter has only cultured staph. They both had cat scans last week for the first time. While my son's lungs look great, my daughter's lungs has lots of problems. Seems that the staph that she has not been aggressively treated for has done damage.

Sharon, mom of Sophia, 7 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
My son first cultured it at 12 months. It was a huge shock. I wanted IV's but the dr did cirpo and tobi. It worked. Jack has since cultured it about once a year.

My daughter has only cultured staph. They both had cat scans last week for the first time. While my son's lungs look great, my daughter's lungs has lots of problems. Seems that the staph that she has not been aggressively treated for has done damage.

Sharon, mom of Sophia, 7 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
My son first cultured it at 12 months. It was a huge shock. I wanted IV's but the dr did cirpo and tobi. It worked. Jack has since cultured it about once a year.

My daughter has only cultured staph. They both had cat scans last week for the first time. While my son's lungs look great, my daughter's lungs has lots of problems. Seems that the staph that she has not been aggressively treated for has done damage.

Sharon, mom of Sophia, 7 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
My son first cultured it at 12 months. It was a huge shock. I wanted IV's but the dr did cirpo and tobi. It worked. Jack has since cultured it about once a year.

My daughter has only cultured staph. They both had cat scans last week for the first time. While my son's lungs look great, my daughter's lungs has lots of problems. Seems that the staph that she has not been aggressively treated for has done damage.

Sharon, mom of Sophia, 7 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
My son first cultured it at 12 months. It was a huge shock. I wanted IV's but the dr did cirpo and tobi. It worked. Jack has since cultured it about once a year.
<br />
<br />My daughter has only cultured staph. They both had cat scans last week for the first time. While my son's lungs look great, my daughter's lungs has lots of problems. Seems that the staph that she has not been aggressively treated for has done damage.
<br />
<br />Sharon, mom of Sophia, 7 and Jack, 4 both with cf
 
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