cultured our first PA

[OperaMama]

Wow. Boy, O boy. Thanks to all of you for the info and insights. I'll be on the phone in the morning, now that the docs are back from the conference in Orlando (hope it was sunny!). I feel hopeful, thanks to many of you. And awed at what many others have had to do-- and yet, everyone is still here with us. THAT'S THE GOOD NEWS. We'll get through no matter which way we go-- I'd prefer to skip IVs because Mr. Big Boy at 6 (LOL) would not really love it in his active life-style.

Thanks again to you all for the input.

Mariannell

 

[OperaMama]

Wow. Boy, O boy. Thanks to all of you for the info and insights. I'll be on the phone in the morning, now that the docs are back from the conference in Orlando (hope it was sunny!). I feel hopeful, thanks to many of you. And awed at what many others have had to do-- and yet, everyone is still here with us. THAT'S THE GOOD NEWS. We'll get through no matter which way we go-- I'd prefer to skip IVs because Mr. Big Boy at 6 (LOL) would not really love it in his active life-style.

Thanks again to you all for the input.

Mariannell

 

[OperaMama]

Wow. Boy, O boy. Thanks to all of you for the info and insights. I'll be on the phone in the morning, now that the docs are back from the conference in Orlando (hope it was sunny!). I feel hopeful, thanks to many of you. And awed at what many others have had to do-- and yet, everyone is still here with us. THAT'S THE GOOD NEWS. We'll get through no matter which way we go-- I'd prefer to skip IVs because Mr. Big Boy at 6 (LOL) would not really love it in his active life-style.

Thanks again to you all for the input.

Mariannell

 

[OperaMama]

Wow. Boy, O boy. Thanks to all of you for the info and insights. I'll be on the phone in the morning, now that the docs are back from the conference in Orlando (hope it was sunny!). I feel hopeful, thanks to many of you. And awed at what many others have had to do-- and yet, everyone is still here with us. THAT'S THE GOOD NEWS. We'll get through no matter which way we go-- I'd prefer to skip IVs because Mr. Big Boy at 6 (LOL) would not really love it in his active life-style.

Thanks again to you all for the input.

Mariannell

 

[OperaMama]

Wow. Boy, O boy. Thanks to all of you for the info and insights. I'll be on the phone in the morning, now that the docs are back from the conference in Orlando (hope it was sunny!). I feel hopeful, thanks to many of you. And awed at what many others have had to do-- and yet, everyone is still here with us. THAT'S THE GOOD NEWS. We'll get through no matter which way we go-- I'd prefer to skip IVs because Mr. Big Boy at 6 (LOL) would not really love it in his active life-style.

Thanks again to you all for the input.

Mariannell

 

[TestifyToLove]

FYI, not necessarily for this situation, but you can manage IV meds quite easily for an active child. We got a PICC line for M and our home health agency put the antibiotics into self infusing balls. Every 6 hours, Dh and I would hook a ball up, then tuck everything under a Baby Leg (a baby size leg warmer). 30 minutes later, we flushed the line and tucked the tubing back in. The Baby Leg assured that M wasn't messing with the PICC line *and* allowed us to tuck the balls in so all he had to do was stop long enough for the hook-up and flushing. The rest of the time, he was active and hardly noticed he was getting IV meds.

For his midnight meds, I would hook him up without even waking him up. That was the one time we didn't come back in 30 minutes to unhook and flush it. Dh would do that when he hooked up the next dose at 6am and then wake me before he headed to work to unhook and flush.

When you need IV antibiotics again, because we all know CFers end up needing them eventually, keep that in mind and you might find them SOO much easier to manage.

 

[TestifyToLove]

FYI, not necessarily for this situation, but you can manage IV meds quite easily for an active child. We got a PICC line for M and our home health agency put the antibiotics into self infusing balls. Every 6 hours, Dh and I would hook a ball up, then tuck everything under a Baby Leg (a baby size leg warmer). 30 minutes later, we flushed the line and tucked the tubing back in. The Baby Leg assured that M wasn't messing with the PICC line *and* allowed us to tuck the balls in so all he had to do was stop long enough for the hook-up and flushing. The rest of the time, he was active and hardly noticed he was getting IV meds.

For his midnight meds, I would hook him up without even waking him up. That was the one time we didn't come back in 30 minutes to unhook and flush it. Dh would do that when he hooked up the next dose at 6am and then wake me before he headed to work to unhook and flush.

When you need IV antibiotics again, because we all know CFers end up needing them eventually, keep that in mind and you might find them SOO much easier to manage.

 

[TestifyToLove]

FYI, not necessarily for this situation, but you can manage IV meds quite easily for an active child. We got a PICC line for M and our home health agency put the antibiotics into self infusing balls. Every 6 hours, Dh and I would hook a ball up, then tuck everything under a Baby Leg (a baby size leg warmer). 30 minutes later, we flushed the line and tucked the tubing back in. The Baby Leg assured that M wasn't messing with the PICC line *and* allowed us to tuck the balls in so all he had to do was stop long enough for the hook-up and flushing. The rest of the time, he was active and hardly noticed he was getting IV meds.

For his midnight meds, I would hook him up without even waking him up. That was the one time we didn't come back in 30 minutes to unhook and flush it. Dh would do that when he hooked up the next dose at 6am and then wake me before he headed to work to unhook and flush.

When you need IV antibiotics again, because we all know CFers end up needing them eventually, keep that in mind and you might find them SOO much easier to manage.

 

[TestifyToLove]

FYI, not necessarily for this situation, but you can manage IV meds quite easily for an active child. We got a PICC line for M and our home health agency put the antibiotics into self infusing balls. Every 6 hours, Dh and I would hook a ball up, then tuck everything under a Baby Leg (a baby size leg warmer). 30 minutes later, we flushed the line and tucked the tubing back in. The Baby Leg assured that M wasn't messing with the PICC line *and* allowed us to tuck the balls in so all he had to do was stop long enough for the hook-up and flushing. The rest of the time, he was active and hardly noticed he was getting IV meds.

For his midnight meds, I would hook him up without even waking him up. That was the one time we didn't come back in 30 minutes to unhook and flush it. Dh would do that when he hooked up the next dose at 6am and then wake me before he headed to work to unhook and flush.

When you need IV antibiotics again, because we all know CFers end up needing them eventually, keep that in mind and you might find them SOO much easier to manage.

 

[TestifyToLove]

FYI, not necessarily for this situation, but you can manage IV meds quite easily for an active child. We got a PICC line for M and our home health agency put the antibiotics into self infusing balls. Every 6 hours, Dh and I would hook a ball up, then tuck everything under a Baby Leg (a baby size leg warmer). 30 minutes later, we flushed the line and tucked the tubing back in. The Baby Leg assured that M wasn't messing with the PICC line *and* allowed us to tuck the balls in so all he had to do was stop long enough for the hook-up and flushing. The rest of the time, he was active and hardly noticed he was getting IV meds.
<br />
<br />For his midnight meds, I would hook him up without even waking him up. That was the one time we didn't come back in 30 minutes to unhook and flush it. Dh would do that when he hooked up the next dose at 6am and then wake me before he headed to work to unhook and flush.
<br />
<br />When you need IV antibiotics again, because we all know CFers end up needing them eventually, keep that in mind and you might find them SOO much easier to manage.

 

[Sakem]

Mairanne,

Has your child ever had a bronch. My son had never cultured anything or Psedudo til he was 10, and a culture showed a "very few" pseduomonas. He was having sinuses issues and was getting surgery for that, so they said while they were doing the surgery they would do a bronch, to see if there was anything growing in his lungs or if this pseduo was post nasal drippage. His bronch came back showing nothing, so They did not treat the psedudo, due to that fact and that he had never had anyother issues.

I was alittle taken back that they did not treat, cause I was always under the impression they were very agressive with the first culture. But they said if it grew again or he had any symptoms they would then treat. That was 2 years ago, nothing since. Sinuses are still a mess

 

[Sakem]

Mairanne,

Has your child ever had a bronch. My son had never cultured anything or Psedudo til he was 10, and a culture showed a "very few" pseduomonas. He was having sinuses issues and was getting surgery for that, so they said while they were doing the surgery they would do a bronch, to see if there was anything growing in his lungs or if this pseduo was post nasal drippage. His bronch came back showing nothing, so They did not treat the psedudo, due to that fact and that he had never had anyother issues.

I was alittle taken back that they did not treat, cause I was always under the impression they were very agressive with the first culture. But they said if it grew again or he had any symptoms they would then treat. That was 2 years ago, nothing since. Sinuses are still a mess

 

[Sakem]

Mairanne,

Has your child ever had a bronch. My son had never cultured anything or Psedudo til he was 10, and a culture showed a "very few" pseduomonas. He was having sinuses issues and was getting surgery for that, so they said while they were doing the surgery they would do a bronch, to see if there was anything growing in his lungs or if this pseduo was post nasal drippage. His bronch came back showing nothing, so They did not treat the psedudo, due to that fact and that he had never had anyother issues.

I was alittle taken back that they did not treat, cause I was always under the impression they were very agressive with the first culture. But they said if it grew again or he had any symptoms they would then treat. That was 2 years ago, nothing since. Sinuses are still a mess

 

[Sakem]

Mairanne,

Has your child ever had a bronch. My son had never cultured anything or Psedudo til he was 10, and a culture showed a "very few" pseduomonas. He was having sinuses issues and was getting surgery for that, so they said while they were doing the surgery they would do a bronch, to see if there was anything growing in his lungs or if this pseduo was post nasal drippage. His bronch came back showing nothing, so They did not treat the psedudo, due to that fact and that he had never had anyother issues.

I was alittle taken back that they did not treat, cause I was always under the impression they were very agressive with the first culture. But they said if it grew again or he had any symptoms they would then treat. That was 2 years ago, nothing since. Sinuses are still a mess

 

[Sakem]

Mairanne,
<br />
<br />Has your child ever had a bronch. My son had never cultured anything or Psedudo til he was 10, and a culture showed a "very few" pseduomonas. He was having sinuses issues and was getting surgery for that, so they said while they were doing the surgery they would do a bronch, to see if there was anything growing in his lungs or if this pseduo was post nasal drippage. His bronch came back showing nothing, so They did not treat the psedudo, due to that fact and that he had never had anyother issues.
<br />
<br /> I was alittle taken back that they did not treat, cause I was always under the impression they were very agressive with the first culture. But they said if it grew again or he had any symptoms they would then treat. That was 2 years ago, nothing since. Sinuses are still a mess

 

[OperaMama]

Hi Sakem, Whose sinuses aren't a mess?!?!?! He just got on Flonase and it has worked like a charm! His PFT ten days ago was great, so I guess we're lucky there still. Got another PFT and swab two weeks from now, so we'll look at how i'ts going, but he seems to be responding very well to the orals and TOBI.

 

[OperaMama]

Hi Sakem, Whose sinuses aren't a mess?!?!?! He just got on Flonase and it has worked like a charm! His PFT ten days ago was great, so I guess we're lucky there still. Got another PFT and swab two weeks from now, so we'll look at how i'ts going, but he seems to be responding very well to the orals and TOBI.

 

[OperaMama]

Hi Sakem, Whose sinuses aren't a mess?!?!?! He just got on Flonase and it has worked like a charm! His PFT ten days ago was great, so I guess we're lucky there still. Got another PFT and swab two weeks from now, so we'll look at how i'ts going, but he seems to be responding very well to the orals and TOBI.

 

[OperaMama]

Hi Sakem, Whose sinuses aren't a mess?!?!?! He just got on Flonase and it has worked like a charm! His PFT ten days ago was great, so I guess we're lucky there still. Got another PFT and swab two weeks from now, so we'll look at how i'ts going, but he seems to be responding very well to the orals and TOBI.

 

[OperaMama]

Hi Sakem, Whose sinuses aren't a mess?!?!?! He just got on Flonase and it has worked like a charm! His PFT ten days ago was great, so I guess we're lucky there still. Got another PFT and swab two weeks from now, so we'll look at how i'ts going, but he seems to be responding very well to the orals and TOBI.