Update on Andrew

TonyaH · Mar 6, 2008

Hi Everyone,
I just wanted to let you all know what was going on since so many of you have shared some experiences and info with me.

We went to the hospital today expecting to be admitted. His PFTs were down a little more...only slightly. But, because he stopped bleeding last night after she discontinued his HTS, she is wondering if the bleed came from that.

So, she started TOBI up again and is having us finish the clindamycin. We have an appointment on the 18th for more pfts. If his numbers don't come up between now and then we will be admitted for ivs. Or, if he bleeds between now or then, we need to go in. But, she is giving us twelve more days to try to get these numbers back up on our own.

Don't really know how I feel about it. Part of me says I should be pushing for ivs now, which I know she would do if I asked. But, she understands my concern about finding out what is causing the problem before he is pumped full of iv antibiotics. They took another culture today, so we'll see if it shows anything. (It was not a good one, I'm sure because of the lack of hts this morning) His fev1 only dropped 1 point, his small airways fell another 6 points. But again, he didn't have his hts. He was also not as crackly sounding without the hts, but our RT could "feel" the crackle, so they knew what I was talking about.

So, I know some of you may be saying "push the ivs now!", and I respect that. I am wondering why I did not say that myself. But, I am also interested to see what happens without the saline for a week. And if we can avoid ivs without causing lower lung function, it's worth a try. But, I am going to have all of my ducks in a row and be ready for an admit on the 18th.

Thanks for answering all of my questions!

TonyaH · Mar 6, 2008

Hi Everyone,
I just wanted to let you all know what was going on since so many of you have shared some experiences and info with me.

We went to the hospital today expecting to be admitted. His PFTs were down a little more...only slightly. But, because he stopped bleeding last night after she discontinued his HTS, she is wondering if the bleed came from that.

So, she started TOBI up again and is having us finish the clindamycin. We have an appointment on the 18th for more pfts. If his numbers don't come up between now and then we will be admitted for ivs. Or, if he bleeds between now or then, we need to go in. But, she is giving us twelve more days to try to get these numbers back up on our own.

Don't really know how I feel about it. Part of me says I should be pushing for ivs now, which I know she would do if I asked. But, she understands my concern about finding out what is causing the problem before he is pumped full of iv antibiotics. They took another culture today, so we'll see if it shows anything. (It was not a good one, I'm sure because of the lack of hts this morning) His fev1 only dropped 1 point, his small airways fell another 6 points. But again, he didn't have his hts. He was also not as crackly sounding without the hts, but our RT could "feel" the crackle, so they knew what I was talking about.

So, I know some of you may be saying "push the ivs now!", and I respect that. I am wondering why I did not say that myself. But, I am also interested to see what happens without the saline for a week. And if we can avoid ivs without causing lower lung function, it's worth a try. But, I am going to have all of my ducks in a row and be ready for an admit on the 18th.

Thanks for answering all of my questions!

TonyaH · Mar 6, 2008

Hi Everyone,
I just wanted to let you all know what was going on since so many of you have shared some experiences and info with me.

We went to the hospital today expecting to be admitted. His PFTs were down a little more...only slightly. But, because he stopped bleeding last night after she discontinued his HTS, she is wondering if the bleed came from that.

So, she started TOBI up again and is having us finish the clindamycin. We have an appointment on the 18th for more pfts. If his numbers don't come up between now and then we will be admitted for ivs. Or, if he bleeds between now or then, we need to go in. But, she is giving us twelve more days to try to get these numbers back up on our own.

Don't really know how I feel about it. Part of me says I should be pushing for ivs now, which I know she would do if I asked. But, she understands my concern about finding out what is causing the problem before he is pumped full of iv antibiotics. They took another culture today, so we'll see if it shows anything. (It was not a good one, I'm sure because of the lack of hts this morning) His fev1 only dropped 1 point, his small airways fell another 6 points. But again, he didn't have his hts. He was also not as crackly sounding without the hts, but our RT could "feel" the crackle, so they knew what I was talking about.

So, I know some of you may be saying "push the ivs now!", and I respect that. I am wondering why I did not say that myself. But, I am also interested to see what happens without the saline for a week. And if we can avoid ivs without causing lower lung function, it's worth a try. But, I am going to have all of my ducks in a row and be ready for an admit on the 18th.

Thanks for answering all of my questions!

TonyaH · Mar 6, 2008

Hi Everyone,
I just wanted to let you all know what was going on since so many of you have shared some experiences and info with me.

We went to the hospital today expecting to be admitted. His PFTs were down a little more...only slightly. But, because he stopped bleeding last night after she discontinued his HTS, she is wondering if the bleed came from that.

So, she started TOBI up again and is having us finish the clindamycin. We have an appointment on the 18th for more pfts. If his numbers don't come up between now and then we will be admitted for ivs. Or, if he bleeds between now or then, we need to go in. But, she is giving us twelve more days to try to get these numbers back up on our own.

Don't really know how I feel about it. Part of me says I should be pushing for ivs now, which I know she would do if I asked. But, she understands my concern about finding out what is causing the problem before he is pumped full of iv antibiotics. They took another culture today, so we'll see if it shows anything. (It was not a good one, I'm sure because of the lack of hts this morning) His fev1 only dropped 1 point, his small airways fell another 6 points. But again, he didn't have his hts. He was also not as crackly sounding without the hts, but our RT could "feel" the crackle, so they knew what I was talking about.

So, I know some of you may be saying "push the ivs now!", and I respect that. I am wondering why I did not say that myself. But, I am also interested to see what happens without the saline for a week. And if we can avoid ivs without causing lower lung function, it's worth a try. But, I am going to have all of my ducks in a row and be ready for an admit on the 18th.

Thanks for answering all of my questions!

TonyaH · Mar 6, 2008

Hi Everyone,
 I just wanted to let you all know what was going on since so many of you have shared some experiences and info with me.
 
 We went to the hospital today expecting to be admitted. His PFTs were down a little more...only slightly. But, because he stopped bleeding last night after she discontinued his HTS, she is wondering if the bleed came from that.
 
 So, she started TOBI up again and is having us finish the clindamycin. We have an appointment on the 18th for more pfts. If his numbers don't come up between now and then we will be admitted for ivs. Or, if he bleeds between now or then, we need to go in. But, she is giving us twelve more days to try to get these numbers back up on our own.
 
 Don't really know how I feel about it. Part of me says I should be pushing for ivs now, which I know she would do if I asked. But, she understands my concern about finding out what is causing the problem before he is pumped full of iv antibiotics. They took another culture today, so we'll see if it shows anything. (It was not a good one, I'm sure because of the lack of hts this morning) His fev1 only dropped 1 point, his small airways fell another 6 points. But again, he didn't have his hts. He was also not as crackly sounding without the hts, but our RT could "feel" the crackle, so they knew what I was talking about.
 
 So, I know some of you may be saying "push the ivs now!", and I respect that. I am wondering why I did not say that myself. But, I am also interested to see what happens without the saline for a week. And if we can avoid ivs without causing lower lung function, it's worth a try. But, I am going to have all of my ducks in a row and be ready for an admit on the 18th.
 
 Thanks for answering all of my questions!

JORDYSMOM · Mar 6, 2008

Thanks for the update. I was wondering if we'd hear from you today. I really hope this works for Andrew, and that he can avoid the admit and IV abx. You know your child better than anyone, and you are working closely with your doc, so he's in good hands. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Stacey

JORDYSMOM · Mar 6, 2008

Thanks for the update. I was wondering if we'd hear from you today. I really hope this works for Andrew, and that he can avoid the admit and IV abx. You know your child better than anyone, and you are working closely with your doc, so he's in good hands. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Stacey

JORDYSMOM · Mar 6, 2008

Thanks for the update. I was wondering if we'd hear from you today. I really hope this works for Andrew, and that he can avoid the admit and IV abx. You know your child better than anyone, and you are working closely with your doc, so he's in good hands. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Stacey

JORDYSMOM · Mar 6, 2008

Thanks for the update. I was wondering if we'd hear from you today. I really hope this works for Andrew, and that he can avoid the admit and IV abx. You know your child better than anyone, and you are working closely with your doc, so he's in good hands. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Stacey

JORDYSMOM · Mar 6, 2008

Thanks for the update. I was wondering if we'd hear from you today. I really hope this works for Andrew, and that he can avoid the admit and IV abx. You know your child better than anyone, and you are working closely with your doc, so he's in good hands. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Stacey

tammykrumrey · Mar 6, 2008

Keep us update<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am glad that his FEV was down only 1 pt. and not more. I think they could vary naturally that much from day to day.

Maybe the cultures will tell more of the 'story'.

Hope he starts feeling better soon. Don't worry about not requesting IVs. Like Stacey said, you know your child the best. And no one wants their child put through IVs unless it is absolutely necessary!

tammykrumrey · Mar 6, 2008

Keep us update<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am glad that his FEV was down only 1 pt. and not more. I think they could vary naturally that much from day to day.

Maybe the cultures will tell more of the 'story'.

Hope he starts feeling better soon. Don't worry about not requesting IVs. Like Stacey said, you know your child the best. And no one wants their child put through IVs unless it is absolutely necessary!

tammykrumrey · Mar 6, 2008

Keep us update<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am glad that his FEV was down only 1 pt. and not more. I think they could vary naturally that much from day to day.

Maybe the cultures will tell more of the 'story'.

Hope he starts feeling better soon. Don't worry about not requesting IVs. Like Stacey said, you know your child the best. And no one wants their child put through IVs unless it is absolutely necessary!

tammykrumrey · Mar 6, 2008

Keep us update<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am glad that his FEV was down only 1 pt. and not more. I think they could vary naturally that much from day to day.

Maybe the cultures will tell more of the 'story'.

Hope he starts feeling better soon. Don't worry about not requesting IVs. Like Stacey said, you know your child the best. And no one wants their child put through IVs unless it is absolutely necessary!

tammykrumrey · Mar 6, 2008

Keep us update<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am glad that his FEV was down only 1 pt. and not more. I think they could vary naturally that much from day to day.
 
 Maybe the cultures will tell more of the 'story'.
 
 Hope he starts feeling better soon. Don't worry about not requesting IVs. Like Stacey said, you know your child the best. And no one wants their child put through IVs unless it is absolutely necessary!

2005CFmom · Mar 7, 2008

Hope he sees a turn around in his PFT's this week...and no more bleeding.

Thanks for the update and keep them coming!

2005CFmom · Mar 7, 2008

Hope he sees a turn around in his PFT's this week...and no more bleeding.

Thanks for the update and keep them coming!

2005CFmom · Mar 7, 2008

Hope he sees a turn around in his PFT's this week...and no more bleeding.

Thanks for the update and keep them coming!

2005CFmom · Mar 7, 2008

Hope he sees a turn around in his PFT's this week...and no more bleeding.

Thanks for the update and keep them coming!

2005CFmom · Mar 7, 2008

Hope he sees a turn around in his PFT's this week...and no more bleeding.
 
 Thanks for the update and keep them coming!

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