Lexi is not getting well, so frustrating.

R

RebekahsMom

New member
Melissa,
I know exactly how frustrating it is. Bek was in the hospital from 9/23 - 10/5. Her right lung was almost filled with pneumonia. Her doc said it could be 6 to 8 weeks before it was totally gone; it's been 10 weeks now, and her coughing is <i>almost</i> as bad as it was before she was admitted. However, then her coughing wasn't nearly as forceful as it is now.

She was at her father's house this past weekend and she told me she threw up while she was there because she was coughing so hard. She has done the same thing 3 times since she came back home. The third time was at 11:30 last night in the middle of her bed.

Her next appointment isn't until 1/8. Bek has been running temps, though. Her temp runs any where from 97 to 101.7, and her CF team doesn't consider anything below 101 as a high temp????? Is anyone else's doctor the same way?? My daughter's temp has me baffled. Last night at 7 it was 101.3, and 2 hours later it was 99.5 and I didn't give her anything to bring it down. Does anyone else have this issue?

I'm wondering if I should tell them I want them to do a bronch to see what is going on down there. Has Lexi ever had this done?
 
R

RebekahsMom

New member
Melissa,
I know exactly how frustrating it is. Bek was in the hospital from 9/23 - 10/5. Her right lung was almost filled with pneumonia. Her doc said it could be 6 to 8 weeks before it was totally gone; it's been 10 weeks now, and her coughing is <i>almost</i> as bad as it was before she was admitted. However, then her coughing wasn't nearly as forceful as it is now.

She was at her father's house this past weekend and she told me she threw up while she was there because she was coughing so hard. She has done the same thing 3 times since she came back home. The third time was at 11:30 last night in the middle of her bed.

Her next appointment isn't until 1/8. Bek has been running temps, though. Her temp runs any where from 97 to 101.7, and her CF team doesn't consider anything below 101 as a high temp????? Is anyone else's doctor the same way?? My daughter's temp has me baffled. Last night at 7 it was 101.3, and 2 hours later it was 99.5 and I didn't give her anything to bring it down. Does anyone else have this issue?

I'm wondering if I should tell them I want them to do a bronch to see what is going on down there. Has Lexi ever had this done?
 
R

RebekahsMom

New member
Melissa,
I know exactly how frustrating it is. Bek was in the hospital from 9/23 - 10/5. Her right lung was almost filled with pneumonia. Her doc said it could be 6 to 8 weeks before it was totally gone; it's been 10 weeks now, and her coughing is <i>almost</i> as bad as it was before she was admitted. However, then her coughing wasn't nearly as forceful as it is now.

She was at her father's house this past weekend and she told me she threw up while she was there because she was coughing so hard. She has done the same thing 3 times since she came back home. The third time was at 11:30 last night in the middle of her bed.

Her next appointment isn't until 1/8. Bek has been running temps, though. Her temp runs any where from 97 to 101.7, and her CF team doesn't consider anything below 101 as a high temp????? Is anyone else's doctor the same way?? My daughter's temp has me baffled. Last night at 7 it was 101.3, and 2 hours later it was 99.5 and I didn't give her anything to bring it down. Does anyone else have this issue?

I'm wondering if I should tell them I want them to do a bronch to see what is going on down there. Has Lexi ever had this done?
 
R

RebekahsMom

New member
Melissa,
I know exactly how frustrating it is. Bek was in the hospital from 9/23 - 10/5. Her right lung was almost filled with pneumonia. Her doc said it could be 6 to 8 weeks before it was totally gone; it's been 10 weeks now, and her coughing is <i>almost</i> as bad as it was before she was admitted. However, then her coughing wasn't nearly as forceful as it is now.

She was at her father's house this past weekend and she told me she threw up while she was there because she was coughing so hard. She has done the same thing 3 times since she came back home. The third time was at 11:30 last night in the middle of her bed.

Her next appointment isn't until 1/8. Bek has been running temps, though. Her temp runs any where from 97 to 101.7, and her CF team doesn't consider anything below 101 as a high temp????? Is anyone else's doctor the same way?? My daughter's temp has me baffled. Last night at 7 it was 101.3, and 2 hours later it was 99.5 and I didn't give her anything to bring it down. Does anyone else have this issue?

I'm wondering if I should tell them I want them to do a bronch to see what is going on down there. Has Lexi ever had this done?
 
R

RebekahsMom

New member
Melissa,
<br />I know exactly how frustrating it is. Bek was in the hospital from 9/23 - 10/5. Her right lung was almost filled with pneumonia. Her doc said it could be 6 to 8 weeks before it was totally gone; it's been 10 weeks now, and her coughing is <i>almost</i> as bad as it was before she was admitted. However, then her coughing wasn't nearly as forceful as it is now.
<br />
<br />She was at her father's house this past weekend and she told me she threw up while she was there because she was coughing so hard. She has done the same thing 3 times since she came back home. The third time was at 11:30 last night in the middle of her bed.
<br />
<br />Her next appointment isn't until 1/8. Bek has been running temps, though. Her temp runs any where from 97 to 101.7, and her CF team doesn't consider anything below 101 as a high temp????? Is anyone else's doctor the same way?? My daughter's temp has me baffled. Last night at 7 it was 101.3, and 2 hours later it was 99.5 and I didn't give her anything to bring it down. Does anyone else have this issue?
<br />
<br />I'm wondering if I should tell them I want them to do a bronch to see what is going on down there. Has Lexi ever had this done?
<br />
 
L

LouLou

New member
It sounds like both Lexi and Rebekah need something. Go with your mommy instinct you guys are right on. Get attention ASAP before the holidays. Don't wait until the January appt's. It may be that they need a different abx combo or one of the other issues mentioned in this thread.

Stay positive!
 
L

LouLou

New member
It sounds like both Lexi and Rebekah need something. Go with your mommy instinct you guys are right on. Get attention ASAP before the holidays. Don't wait until the January appt's. It may be that they need a different abx combo or one of the other issues mentioned in this thread.

Stay positive!
 
L

LouLou

New member
It sounds like both Lexi and Rebekah need something. Go with your mommy instinct you guys are right on. Get attention ASAP before the holidays. Don't wait until the January appt's. It may be that they need a different abx combo or one of the other issues mentioned in this thread.

Stay positive!
 
L

LouLou

New member
It sounds like both Lexi and Rebekah need something. Go with your mommy instinct you guys are right on. Get attention ASAP before the holidays. Don't wait until the January appt's. It may be that they need a different abx combo or one of the other issues mentioned in this thread.

Stay positive!
 
L

LouLou

New member
It sounds like both Lexi and Rebekah need something. Go with your mommy instinct you guys are right on. Get attention ASAP before the holidays. Don't wait until the January appt's. It may be that they need a different abx combo or one of the other issues mentioned in this thread.
<br />
<br />Stay positive!
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>Her temp runs any where from 97 to 101.7, and her CF team doesn't consider anything below 101 as a high temp????? Is anyone else's doctor the same way??</end quote></div>
This always upsets me; there is a lot more to a child's health than how high a fever is. If a kid has a fever and is ACTING VERY SICK, this matters a lot more than how high the temp is, IMO. Emily is often a dishrag with a temp of 100-101* and my son, who always runs hot, even with a simple virus, sometimes wants to be up and actively playing, still eating, etc with a temp of 103*. You tell me which is more serious!! I hate 'blanket rules' in medicine... I agree with LouLou- she needs attention NOW. (BTW- when Emily is coughing hard enough to vomit, it's always been bronchitis or pneumonia.)

Melissa~ I'd want to find out if her abx are ones that are capable of tackling these new bugs or if it's a regimen that she's been on based on her previous culture results. Since her new cultures are worse, is that ORSA sensitive to Septra vs. whatever she cultured previously? If it was my child I'd want to know that whatever med she will be on long-term has a chance of working. And often, mold/fungal bugs require specialized treatment: again, what was that sensitive to when they grew it out. I'd ask specific questions about anything you aren't sure of... your concerns are all valid.
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>Her temp runs any where from 97 to 101.7, and her CF team doesn't consider anything below 101 as a high temp????? Is anyone else's doctor the same way??</end quote></div>
This always upsets me; there is a lot more to a child's health than how high a fever is. If a kid has a fever and is ACTING VERY SICK, this matters a lot more than how high the temp is, IMO. Emily is often a dishrag with a temp of 100-101* and my son, who always runs hot, even with a simple virus, sometimes wants to be up and actively playing, still eating, etc with a temp of 103*. You tell me which is more serious!! I hate 'blanket rules' in medicine... I agree with LouLou- she needs attention NOW. (BTW- when Emily is coughing hard enough to vomit, it's always been bronchitis or pneumonia.)

Melissa~ I'd want to find out if her abx are ones that are capable of tackling these new bugs or if it's a regimen that she's been on based on her previous culture results. Since her new cultures are worse, is that ORSA sensitive to Septra vs. whatever she cultured previously? If it was my child I'd want to know that whatever med she will be on long-term has a chance of working. And often, mold/fungal bugs require specialized treatment: again, what was that sensitive to when they grew it out. I'd ask specific questions about anything you aren't sure of... your concerns are all valid.
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>Her temp runs any where from 97 to 101.7, and her CF team doesn't consider anything below 101 as a high temp????? Is anyone else's doctor the same way??</end quote></div>
This always upsets me; there is a lot more to a child's health than how high a fever is. If a kid has a fever and is ACTING VERY SICK, this matters a lot more than how high the temp is, IMO. Emily is often a dishrag with a temp of 100-101* and my son, who always runs hot, even with a simple virus, sometimes wants to be up and actively playing, still eating, etc with a temp of 103*. You tell me which is more serious!! I hate 'blanket rules' in medicine... I agree with LouLou- she needs attention NOW. (BTW- when Emily is coughing hard enough to vomit, it's always been bronchitis or pneumonia.)

Melissa~ I'd want to find out if her abx are ones that are capable of tackling these new bugs or if it's a regimen that she's been on based on her previous culture results. Since her new cultures are worse, is that ORSA sensitive to Septra vs. whatever she cultured previously? If it was my child I'd want to know that whatever med she will be on long-term has a chance of working. And often, mold/fungal bugs require specialized treatment: again, what was that sensitive to when they grew it out. I'd ask specific questions about anything you aren't sure of... your concerns are all valid.
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>Her temp runs any where from 97 to 101.7, and her CF team doesn't consider anything below 101 as a high temp????? Is anyone else's doctor the same way??</end quote>
This always upsets me; there is a lot more to a child's health than how high a fever is. If a kid has a fever and is ACTING VERY SICK, this matters a lot more than how high the temp is, IMO. Emily is often a dishrag with a temp of 100-101* and my son, who always runs hot, even with a simple virus, sometimes wants to be up and actively playing, still eating, etc with a temp of 103*. You tell me which is more serious!! I hate 'blanket rules' in medicine... I agree with LouLou- she needs attention NOW. (BTW- when Emily is coughing hard enough to vomit, it's always been bronchitis or pneumonia.)

Melissa~ I'd want to find out if her abx are ones that are capable of tackling these new bugs or if it's a regimen that she's been on based on her previous culture results. Since her new cultures are worse, is that ORSA sensitive to Septra vs. whatever she cultured previously? If it was my child I'd want to know that whatever med she will be on long-term has a chance of working. And often, mold/fungal bugs require specialized treatment: again, what was that sensitive to when they grew it out. I'd ask specific questions about anything you aren't sure of... your concerns are all valid.
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>Her temp runs any where from 97 to 101.7, and her CF team doesn't consider anything below 101 as a high temp????? Is anyone else's doctor the same way??</end quote>
<br />This always upsets me; there is a lot more to a child's health than how high a fever is. If a kid has a fever and is ACTING VERY SICK, this matters a lot more than how high the temp is, IMO. Emily is often a dishrag with a temp of 100-101* and my son, who always runs hot, even with a simple virus, sometimes wants to be up and actively playing, still eating, etc with a temp of 103*. You tell me which is more serious!! I hate 'blanket rules' in medicine... I agree with LouLou- she needs attention NOW. (BTW- when Emily is coughing hard enough to vomit, it's always been bronchitis or pneumonia.)
<br />
<br />Melissa~ I'd want to find out if her abx are ones that are capable of tackling these new bugs or if it's a regimen that she's been on based on her previous culture results. Since her new cultures are worse, is that ORSA sensitive to Septra vs. whatever she cultured previously? If it was my child I'd want to know that whatever med she will be on long-term has a chance of working. And often, mold/fungal bugs require specialized treatment: again, what was that sensitive to when they grew it out. I'd ask specific questions about anything you aren't sure of... your concerns are all valid.
 
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