Does it ever end?

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redheadedmommy

New member
2 weeks ago wed. we got out of the hospital we had spent a week in there for phnemonia/ mucus plug. we had ivs antibiotics till about 3 days before they let us out. then it was oral augmenten and prednizone. we finshed off the last dose 4 days ago and now shes sick again, i'm keeping up on her treatments every 4 hrs, and vitamins, and enzymes,we went to her primary today and she put her on augmentin and prednizone and gaveher a rocephan shot,we go back to her primary tomorrow, and then to columbia for her CF visit. *sigh* it feels like its a never ending cycle doesany one else go through this? get your baby well and she turns right around and gets sick again??
 
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redheadedmommy

New member
2 weeks ago wed. we got out of the hospital we had spent a week in there for phnemonia/ mucus plug. we had ivs antibiotics till about 3 days before they let us out. then it was oral augmenten and prednizone. we finshed off the last dose 4 days ago and now shes sick again, i'm keeping up on her treatments every 4 hrs, and vitamins, and enzymes,we went to her primary today and she put her on augmentin and prednizone and gaveher a rocephan shot,we go back to her primary tomorrow, and then to columbia for her CF visit. *sigh* it feels like its a never ending cycle doesany one else go through this? get your baby well and she turns right around and gets sick again??
 
R

redheadedmommy

New member
2 weeks ago wed. we got out of the hospital we had spent a week in there for phnemonia/ mucus plug. we had ivs antibiotics till about 3 days before they let us out. then it was oral augmenten and prednizone. we finshed off the last dose 4 days ago and now shes sick again, i'm keeping up on her treatments every 4 hrs, and vitamins, and enzymes,we went to her primary today and she put her on augmentin and prednizone and gaveher a rocephan shot,we go back to her primary tomorrow, and then to columbia for her CF visit. *sigh* it feels like its a never ending cycle doesany one else go through this? get your baby well and she turns right around and gets sick again??
 
R

redheadedmommy

New member
2 weeks ago wed. we got out of the hospital we had spent a week in there for phnemonia/ mucus plug. we had ivs antibiotics till about 3 days before they let us out. then it was oral augmenten and prednizone. we finshed off the last dose 4 days ago and now shes sick again, i'm keeping up on her treatments every 4 hrs, and vitamins, and enzymes,we went to her primary today and she put her on augmentin and prednizone and gaveher a rocephan shot,we go back to her primary tomorrow, and then to columbia for her CF visit. *sigh* it feels like its a never ending cycle doesany one else go through this? get your baby well and she turns right around and gets sick again??
 
R

redheadedmommy

New member
2 weeks ago wed. we got out of the hospital we had spent a week in there for phnemonia/ mucus plug. we had ivs antibiotics till about 3 days before they let us out. then it was oral augmenten and prednizone. we finshed off the last dose 4 days ago and now shes sick again, i'm keeping up on her treatments every 4 hrs, and vitamins, and enzymes,we went to her primary today and she put her on augmentin and prednizone and gaveher a rocephan shot,we go back to her primary tomorrow, and then to columbia for her CF visit. *sigh* it feels like its a never ending cycle doesany one else go through this? get your baby well and she turns right around and gets sick again??
 
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bethylove

Guest
Well, not exactly, because I don't have children. But you are describing my CF cycle perfectly. I am hospitalized, then a few weeks outta the joint, sick as a dog again. Antibiotics make it better, then as SOON as I'm off them, as in Day 1 off, I feel crummy again. Repeat the process until next hospitalization. It's a bummer. I still think I'm culturing something new, because this is different for me. Just keep your chin up, I know it's not easy, but its the only thing you can do.
 
B

bethylove

Guest
Well, not exactly, because I don't have children. But you are describing my CF cycle perfectly. I am hospitalized, then a few weeks outta the joint, sick as a dog again. Antibiotics make it better, then as SOON as I'm off them, as in Day 1 off, I feel crummy again. Repeat the process until next hospitalization. It's a bummer. I still think I'm culturing something new, because this is different for me. Just keep your chin up, I know it's not easy, but its the only thing you can do.
 
B

bethylove

Guest
Well, not exactly, because I don't have children. But you are describing my CF cycle perfectly. I am hospitalized, then a few weeks outta the joint, sick as a dog again. Antibiotics make it better, then as SOON as I'm off them, as in Day 1 off, I feel crummy again. Repeat the process until next hospitalization. It's a bummer. I still think I'm culturing something new, because this is different for me. Just keep your chin up, I know it's not easy, but its the only thing you can do.
 
B

bethylove

Guest
Well, not exactly, because I don't have children. But you are describing my CF cycle perfectly. I am hospitalized, then a few weeks outta the joint, sick as a dog again. Antibiotics make it better, then as SOON as I'm off them, as in Day 1 off, I feel crummy again. Repeat the process until next hospitalization. It's a bummer. I still think I'm culturing something new, because this is different for me. Just keep your chin up, I know it's not easy, but its the only thing you can do.
 
B

bethylove

Guest
Well, not exactly, because I don't have children. But you are describing my CF cycle perfectly. I am hospitalized, then a few weeks outta the joint, sick as a dog again. Antibiotics make it better, then as SOON as I'm off them, as in Day 1 off, I feel crummy again. Repeat the process until next hospitalization. It's a bummer. I still think I'm culturing something new, because this is different for me. Just keep your chin up, I know it's not easy, but its the only thing you can do.
 
C

chevbacher

New member
i can really understand what you are going through..it definitely feels like that on some days..i think one of the toughest aspects of dealing with my baby having CF is that it is an ongoing lifelong condition. unfortunately it's not something that 'gets better'. but i have experiences as i am sure you will as well that there will be better times/ weeks/months and harder times...i try to draw on the times she is well to give me strength and courage for what i know inevitably is around the corner..hang in there..
 
C

chevbacher

New member
i can really understand what you are going through..it definitely feels like that on some days..i think one of the toughest aspects of dealing with my baby having CF is that it is an ongoing lifelong condition. unfortunately it's not something that 'gets better'. but i have experiences as i am sure you will as well that there will be better times/ weeks/months and harder times...i try to draw on the times she is well to give me strength and courage for what i know inevitably is around the corner..hang in there..
 
C

chevbacher

New member
i can really understand what you are going through..it definitely feels like that on some days..i think one of the toughest aspects of dealing with my baby having CF is that it is an ongoing lifelong condition. unfortunately it's not something that 'gets better'. but i have experiences as i am sure you will as well that there will be better times/ weeks/months and harder times...i try to draw on the times she is well to give me strength and courage for what i know inevitably is around the corner..hang in there..
 
C

chevbacher

New member
i can really understand what you are going through..it definitely feels like that on some days..i think one of the toughest aspects of dealing with my baby having CF is that it is an ongoing lifelong condition. unfortunately it's not something that 'gets better'. but i have experiences as i am sure you will as well that there will be better times/ weeks/months and harder times...i try to draw on the times she is well to give me strength and courage for what i know inevitably is around the corner..hang in there..
 
C

chevbacher

New member
i can really understand what you are going through..it definitely feels like that on some days..i think one of the toughest aspects of dealing with my baby having CF is that it is an ongoing lifelong condition. unfortunately it's not something that 'gets better'. but i have experiences as i am sure you will as well that there will be better times/ weeks/months and harder times...i try to draw on the times she is well to give me strength and courage for what i know inevitably is around the corner..hang in there..
 
H

hmw

New member
I'm so sorry to hear that your baby is still struggling! <img src="i/expressions/face-icon-small-sad.gif" border="0">

<div class="FTQUOTE"><begin quote>2 weeks ago wed. we got out of the hospital we had spent a week in there for phnemonia/ mucus plug. we had ivs antibiotics till about 3 days before they let us out. then it was oral augmenten and prednizone. we finshed off the last dose 4 days ago</end quote></div>
If I have your timeline correct~ you spent a week in the hospital, but only had IV's for the first 4 days there and then switched to an oral antibiotic? Given when she started the oral and she already finished it 4 days ago, I assume she was given a 14 day rx. I would consider the possibility that she wasn't given a sufficient course of abx to treat the original bout of pneumonia that she had and that the symptoms you are seeing now aren't actually a 'new' illness but actually a return of what she had in the first place due to not enough abx to completely get rid of it. Young infants in general are also especially vulnerable to infection due to their immune systems not being fully developed yet.

It will take time to figure out how best to treat your baby and what are the most effective meds and how long she'll need to be treated in order to get the best outcome. Once they get to better know how HER cf presents, what bugs SHE cultures, how SHE responds to various treatments, they can optimize her treatment regimen, and hopefully she will not continue to always be so sick. CF is different for everyone, and we do have to prepare ourselves for the long haul- it is all about living with a daily chronic condition even when she is well and that is very hard and overwhelming sometimes. But it will become more routine and there is reason to hope for improvement given time to figure her out and with proactive treatment.

For right now the very best thing you can be doing is keep up frequent cpt and whatever inhaled meds are rx'ed to go with them- that's the best way to keep her airways clear and to help her symptoms. Lingering cough/congestion from pneumonia can take a LONG time to go away, even in people with no respiratory conditions, so it's especially important to be proactive with her treatments given she was so sick with this.
 
H

hmw

New member
I'm so sorry to hear that your baby is still struggling! <img src="i/expressions/face-icon-small-sad.gif" border="0">

<div class="FTQUOTE"><begin quote>2 weeks ago wed. we got out of the hospital we had spent a week in there for phnemonia/ mucus plug. we had ivs antibiotics till about 3 days before they let us out. then it was oral augmenten and prednizone. we finshed off the last dose 4 days ago</end quote></div>
If I have your timeline correct~ you spent a week in the hospital, but only had IV's for the first 4 days there and then switched to an oral antibiotic? Given when she started the oral and she already finished it 4 days ago, I assume she was given a 14 day rx. I would consider the possibility that she wasn't given a sufficient course of abx to treat the original bout of pneumonia that she had and that the symptoms you are seeing now aren't actually a 'new' illness but actually a return of what she had in the first place due to not enough abx to completely get rid of it. Young infants in general are also especially vulnerable to infection due to their immune systems not being fully developed yet.

It will take time to figure out how best to treat your baby and what are the most effective meds and how long she'll need to be treated in order to get the best outcome. Once they get to better know how HER cf presents, what bugs SHE cultures, how SHE responds to various treatments, they can optimize her treatment regimen, and hopefully she will not continue to always be so sick. CF is different for everyone, and we do have to prepare ourselves for the long haul- it is all about living with a daily chronic condition even when she is well and that is very hard and overwhelming sometimes. But it will become more routine and there is reason to hope for improvement given time to figure her out and with proactive treatment.

For right now the very best thing you can be doing is keep up frequent cpt and whatever inhaled meds are rx'ed to go with them- that's the best way to keep her airways clear and to help her symptoms. Lingering cough/congestion from pneumonia can take a LONG time to go away, even in people with no respiratory conditions, so it's especially important to be proactive with her treatments given she was so sick with this.
 
H

hmw

New member
I'm so sorry to hear that your baby is still struggling! <img src="i/expressions/face-icon-small-sad.gif" border="0">

<div class="FTQUOTE"><begin quote>2 weeks ago wed. we got out of the hospital we had spent a week in there for phnemonia/ mucus plug. we had ivs antibiotics till about 3 days before they let us out. then it was oral augmenten and prednizone. we finshed off the last dose 4 days ago</end quote></div>
If I have your timeline correct~ you spent a week in the hospital, but only had IV's for the first 4 days there and then switched to an oral antibiotic? Given when she started the oral and she already finished it 4 days ago, I assume she was given a 14 day rx. I would consider the possibility that she wasn't given a sufficient course of abx to treat the original bout of pneumonia that she had and that the symptoms you are seeing now aren't actually a 'new' illness but actually a return of what she had in the first place due to not enough abx to completely get rid of it. Young infants in general are also especially vulnerable to infection due to their immune systems not being fully developed yet.

It will take time to figure out how best to treat your baby and what are the most effective meds and how long she'll need to be treated in order to get the best outcome. Once they get to better know how HER cf presents, what bugs SHE cultures, how SHE responds to various treatments, they can optimize her treatment regimen, and hopefully she will not continue to always be so sick. CF is different for everyone, and we do have to prepare ourselves for the long haul- it is all about living with a daily chronic condition even when she is well and that is very hard and overwhelming sometimes. But it will become more routine and there is reason to hope for improvement given time to figure her out and with proactive treatment.

For right now the very best thing you can be doing is keep up frequent cpt and whatever inhaled meds are rx'ed to go with them- that's the best way to keep her airways clear and to help her symptoms. Lingering cough/congestion from pneumonia can take a LONG time to go away, even in people with no respiratory conditions, so it's especially important to be proactive with her treatments given she was so sick with this.
 
H

hmw

New member
I'm so sorry to hear that your baby is still struggling! <img src="i/expressions/face-icon-small-sad.gif" border="0">

<div class="FTQUOTE"><begin quote>2 weeks ago wed. we got out of the hospital we had spent a week in there for phnemonia/ mucus plug. we had ivs antibiotics till about 3 days before they let us out. then it was oral augmenten and prednizone. we finshed off the last dose 4 days ago</end quote>
If I have your timeline correct~ you spent a week in the hospital, but only had IV's for the first 4 days there and then switched to an oral antibiotic? Given when she started the oral and she already finished it 4 days ago, I assume she was given a 14 day rx. I would consider the possibility that she wasn't given a sufficient course of abx to treat the original bout of pneumonia that she had and that the symptoms you are seeing now aren't actually a 'new' illness but actually a return of what she had in the first place due to not enough abx to completely get rid of it. Young infants in general are also especially vulnerable to infection due to their immune systems not being fully developed yet.

It will take time to figure out how best to treat your baby and what are the most effective meds and how long she'll need to be treated in order to get the best outcome. Once they get to better know how HER cf presents, what bugs SHE cultures, how SHE responds to various treatments, they can optimize her treatment regimen, and hopefully she will not continue to always be so sick. CF is different for everyone, and we do have to prepare ourselves for the long haul- it is all about living with a daily chronic condition even when she is well and that is very hard and overwhelming sometimes. But it will become more routine and there is reason to hope for improvement given time to figure her out and with proactive treatment.

For right now the very best thing you can be doing is keep up frequent cpt and whatever inhaled meds are rx'ed to go with them- that's the best way to keep her airways clear and to help her symptoms. Lingering cough/congestion from pneumonia can take a LONG time to go away, even in people with no respiratory conditions, so it's especially important to be proactive with her treatments given she was so sick with this.
 
H

hmw

New member
I'm so sorry to hear that your baby is still struggling! <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br /><div class="FTQUOTE"><begin quote>2 weeks ago wed. we got out of the hospital we had spent a week in there for phnemonia/ mucus plug. we had ivs antibiotics till about 3 days before they let us out. then it was oral augmenten and prednizone. we finshed off the last dose 4 days ago</end quote>
<br />If I have your timeline correct~ you spent a week in the hospital, but only had IV's for the first 4 days there and then switched to an oral antibiotic? Given when she started the oral and she already finished it 4 days ago, I assume she was given a 14 day rx. I would consider the possibility that she wasn't given a sufficient course of abx to treat the original bout of pneumonia that she had and that the symptoms you are seeing now aren't actually a 'new' illness but actually a return of what she had in the first place due to not enough abx to completely get rid of it. Young infants in general are also especially vulnerable to infection due to their immune systems not being fully developed yet.
<br />
<br />It will take time to figure out how best to treat your baby and what are the most effective meds and how long she'll need to be treated in order to get the best outcome. Once they get to better know how HER cf presents, what bugs SHE cultures, how SHE responds to various treatments, they can optimize her treatment regimen, and hopefully she will not continue to always be so sick. CF is different for everyone, and we do have to prepare ourselves for the long haul- it is all about living with a daily chronic condition even when she is well and that is very hard and overwhelming sometimes. But it will become more routine and there is reason to hope for improvement given time to figure her out and with proactive treatment.
<br />
<br />For right now the very best thing you can be doing is keep up frequent cpt and whatever inhaled meds are rx'ed to go with them- that's the best way to keep her airways clear and to help her symptoms. Lingering cough/congestion from pneumonia can take a LONG time to go away, even in people with no respiratory conditions, so it's especially important to be proactive with her treatments given she was so sick with this.
 
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