Rebekah's visit

[RebekahsMom]

Hi everyone,

We had our visit with Dr. Black and everyone else today. Unfortunately it wasn't so good. Once again, they tried her on her blowing games, but either she just wasn't interested, or she just knew that she wasn't going to be able to do a good job since she would start to cough. She doesn't understand that they really want her to cough.

They took yet another x-ray (each time we go in now) and saw what looks like congestion in both lungs still. More in the right than in the left. This after almost 2 weeks of bactrim and 2 weeks of zyvox. They want her back in on July 21st at 10 am to do another x-ray to compare with today's and possibly admit her for 2 weeks. I'm worried, but I know it will help her.

 

[RebekahsMom]

Hi everyone,

We had our visit with Dr. Black and everyone else today. Unfortunately it wasn't so good. Once again, they tried her on her blowing games, but either she just wasn't interested, or she just knew that she wasn't going to be able to do a good job since she would start to cough. She doesn't understand that they really want her to cough.

They took yet another x-ray (each time we go in now) and saw what looks like congestion in both lungs still. More in the right than in the left. This after almost 2 weeks of bactrim and 2 weeks of zyvox. They want her back in on July 21st at 10 am to do another x-ray to compare with today's and possibly admit her for 2 weeks. I'm worried, but I know it will help her.

 

[RebekahsMom]

Hi everyone,

We had our visit with Dr. Black and everyone else today. Unfortunately it wasn't so good. Once again, they tried her on her blowing games, but either she just wasn't interested, or she just knew that she wasn't going to be able to do a good job since she would start to cough. She doesn't understand that they really want her to cough.

They took yet another x-ray (each time we go in now) and saw what looks like congestion in both lungs still. More in the right than in the left. This after almost 2 weeks of bactrim and 2 weeks of zyvox. They want her back in on July 21st at 10 am to do another x-ray to compare with today's and possibly admit her for 2 weeks. I'm worried, but I know it will help her.

 

[RebekahsMom]

Hi everyone,

We had our visit with Dr. Black and everyone else today. Unfortunately it wasn't so good. Once again, they tried her on her blowing games, but either she just wasn't interested, or she just knew that she wasn't going to be able to do a good job since she would start to cough. She doesn't understand that they really want her to cough.

They took yet another x-ray (each time we go in now) and saw what looks like congestion in both lungs still. More in the right than in the left. This after almost 2 weeks of bactrim and 2 weeks of zyvox. They want her back in on July 21st at 10 am to do another x-ray to compare with today's and possibly admit her for 2 weeks. I'm worried, but I know it will help her.

 

[RebekahsMom]

Hi everyone,
<br />
<br />We had our visit with Dr. Black and everyone else today. Unfortunately it wasn't so good. Once again, they tried her on her blowing games, but either she just wasn't interested, or she just knew that she wasn't going to be able to do a good job since she would start to cough. She doesn't understand that they really want her to cough.
<br />
<br />They took yet another x-ray (each time we go in now) and saw what looks like congestion in both lungs still. More in the right than in the left. This after almost 2 weeks of bactrim and 2 weeks of zyvox. They want her back in on July 21st at 10 am to do another x-ray to compare with today's and possibly admit her for 2 weeks. I'm worried, but I know it will help her.
<br />
<br />

 

[ctalbott0609]

So, I know I'm super new to this buttt....I think she was just excited to meet us <img src="i/expressions/face-icon-small-smile.gif" border="0"> Really though, I'm so sorry. Your daughter is so beautiful, and I can't possibly express how much hope, and reassurance she gave me today. Even though everyone says Paige will look perfectly normal, and be perfectly normal, it still took seeing it, before I could actually believe that. I was honestly so stunned to meet you and Rebekah today, and I was also very tired, and not totally with it yet lol. The nurse just came in and said that there was a mom here with her daughter who had heard about me on the CF forum, and wanted to meet me, and that she would be in the room next to me. She asked me if that was ok, and the next thing I knew, we were talking to each other lol. Paige woke up after her bottle, and I was going to come introduce her to you, but you and Rebekah were gone by then <img src="i/expressions/face-icon-small-sad.gif" border="0"> Maybe we'll run into each other again very soon. Our next appt. is on the 24th, but hopefully not too long after that! I really am so relieved to finally have personally met someone with the ability to help me through this. I look forward to seeing you and Rebekah again soon, and thank you for the offer to stay with you if we ever have to stay in KC. That's such a relief as well! We'll definitely remember it <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ctalbott0609]

So, I know I'm super new to this buttt....I think she was just excited to meet us <img src="i/expressions/face-icon-small-smile.gif" border="0"> Really though, I'm so sorry. Your daughter is so beautiful, and I can't possibly express how much hope, and reassurance she gave me today. Even though everyone says Paige will look perfectly normal, and be perfectly normal, it still took seeing it, before I could actually believe that. I was honestly so stunned to meet you and Rebekah today, and I was also very tired, and not totally with it yet lol. The nurse just came in and said that there was a mom here with her daughter who had heard about me on the CF forum, and wanted to meet me, and that she would be in the room next to me. She asked me if that was ok, and the next thing I knew, we were talking to each other lol. Paige woke up after her bottle, and I was going to come introduce her to you, but you and Rebekah were gone by then <img src="i/expressions/face-icon-small-sad.gif" border="0"> Maybe we'll run into each other again very soon. Our next appt. is on the 24th, but hopefully not too long after that! I really am so relieved to finally have personally met someone with the ability to help me through this. I look forward to seeing you and Rebekah again soon, and thank you for the offer to stay with you if we ever have to stay in KC. That's such a relief as well! We'll definitely remember it <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ctalbott0609]

So, I know I'm super new to this buttt....I think she was just excited to meet us <img src="i/expressions/face-icon-small-smile.gif" border="0"> Really though, I'm so sorry. Your daughter is so beautiful, and I can't possibly express how much hope, and reassurance she gave me today. Even though everyone says Paige will look perfectly normal, and be perfectly normal, it still took seeing it, before I could actually believe that. I was honestly so stunned to meet you and Rebekah today, and I was also very tired, and not totally with it yet lol. The nurse just came in and said that there was a mom here with her daughter who had heard about me on the CF forum, and wanted to meet me, and that she would be in the room next to me. She asked me if that was ok, and the next thing I knew, we were talking to each other lol. Paige woke up after her bottle, and I was going to come introduce her to you, but you and Rebekah were gone by then <img src="i/expressions/face-icon-small-sad.gif" border="0"> Maybe we'll run into each other again very soon. Our next appt. is on the 24th, but hopefully not too long after that! I really am so relieved to finally have personally met someone with the ability to help me through this. I look forward to seeing you and Rebekah again soon, and thank you for the offer to stay with you if we ever have to stay in KC. That's such a relief as well! We'll definitely remember it <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ctalbott0609]

So, I know I'm super new to this buttt....I think she was just excited to meet us <img src="i/expressions/face-icon-small-smile.gif" border="0"> Really though, I'm so sorry. Your daughter is so beautiful, and I can't possibly express how much hope, and reassurance she gave me today. Even though everyone says Paige will look perfectly normal, and be perfectly normal, it still took seeing it, before I could actually believe that. I was honestly so stunned to meet you and Rebekah today, and I was also very tired, and not totally with it yet lol. The nurse just came in and said that there was a mom here with her daughter who had heard about me on the CF forum, and wanted to meet me, and that she would be in the room next to me. She asked me if that was ok, and the next thing I knew, we were talking to each other lol. Paige woke up after her bottle, and I was going to come introduce her to you, but you and Rebekah were gone by then <img src="i/expressions/face-icon-small-sad.gif" border="0"> Maybe we'll run into each other again very soon. Our next appt. is on the 24th, but hopefully not too long after that! I really am so relieved to finally have personally met someone with the ability to help me through this. I look forward to seeing you and Rebekah again soon, and thank you for the offer to stay with you if we ever have to stay in KC. That's such a relief as well! We'll definitely remember it <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ctalbott0609]

So, I know I'm super new to this buttt....I think she was just excited to meet us <img src="i/expressions/face-icon-small-smile.gif" border="0"> Really though, I'm so sorry. Your daughter is so beautiful, and I can't possibly express how much hope, and reassurance she gave me today. Even though everyone says Paige will look perfectly normal, and be perfectly normal, it still took seeing it, before I could actually believe that. I was honestly so stunned to meet you and Rebekah today, and I was also very tired, and not totally with it yet lol. The nurse just came in and said that there was a mom here with her daughter who had heard about me on the CF forum, and wanted to meet me, and that she would be in the room next to me. She asked me if that was ok, and the next thing I knew, we were talking to each other lol. Paige woke up after her bottle, and I was going to come introduce her to you, but you and Rebekah were gone by then <img src="i/expressions/face-icon-small-sad.gif" border="0"> Maybe we'll run into each other again very soon. Our next appt. is on the 24th, but hopefully not too long after that! I really am so relieved to finally have personally met someone with the ability to help me through this. I look forward to seeing you and Rebekah again soon, and thank you for the offer to stay with you if we ever have to stay in KC. That's such a relief as well! We'll definitely remember it <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[MaksNana]

Hi Robin,
I'm sorry to hear your having problems with your little one...I know it can drive you CRAZY !!!!!We have had alot of problems with Makailyn's health this pass year.Her appt. is July 16th,,and I'm hoping to get some answers to try and get her well...
One of the problems I have is Makailyn will cough alot when the doctor walks out of the room or when he is coming ito the room , so he misses the sound of her cough...
Which has been very different the pass few months. I thought it was interesting that you said, they play blowing games to try to get her to cough....At our clinic they don't do anything like that (but I wish they did)cause sometimes you feel like they look at you like you don't know what your talking about.Even though her x-rays will come back with problems...
I was wondering ,,, are they doing cultures on her to see if there are pathogens going on .. Sometimes I think the x-rays care confusing to all the doctors.. I can take an x-ray to one doctor and he'll say OMG,,,and take it to another doctor and he'll say ,well not to bad, it's just part of CF.
You could also request a CT scan ,,, and that can help alot,,which is what I'm going to do on the next appt..
Please keep in touch,,Best Wishes to you and your family

 

[MaksNana]

Hi Robin,
I'm sorry to hear your having problems with your little one...I know it can drive you CRAZY !!!!!We have had alot of problems with Makailyn's health this pass year.Her appt. is July 16th,,and I'm hoping to get some answers to try and get her well...
One of the problems I have is Makailyn will cough alot when the doctor walks out of the room or when he is coming ito the room , so he misses the sound of her cough...
Which has been very different the pass few months. I thought it was interesting that you said, they play blowing games to try to get her to cough....At our clinic they don't do anything like that (but I wish they did)cause sometimes you feel like they look at you like you don't know what your talking about.Even though her x-rays will come back with problems...
I was wondering ,,, are they doing cultures on her to see if there are pathogens going on .. Sometimes I think the x-rays care confusing to all the doctors.. I can take an x-ray to one doctor and he'll say OMG,,,and take it to another doctor and he'll say ,well not to bad, it's just part of CF.
You could also request a CT scan ,,, and that can help alot,,which is what I'm going to do on the next appt..
Please keep in touch,,Best Wishes to you and your family

 

[MaksNana]

Hi Robin,
I'm sorry to hear your having problems with your little one...I know it can drive you CRAZY !!!!!We have had alot of problems with Makailyn's health this pass year.Her appt. is July 16th,,and I'm hoping to get some answers to try and get her well...
One of the problems I have is Makailyn will cough alot when the doctor walks out of the room or when he is coming ito the room , so he misses the sound of her cough...
Which has been very different the pass few months. I thought it was interesting that you said, they play blowing games to try to get her to cough....At our clinic they don't do anything like that (but I wish they did)cause sometimes you feel like they look at you like you don't know what your talking about.Even though her x-rays will come back with problems...
I was wondering ,,, are they doing cultures on her to see if there are pathogens going on .. Sometimes I think the x-rays care confusing to all the doctors.. I can take an x-ray to one doctor and he'll say OMG,,,and take it to another doctor and he'll say ,well not to bad, it's just part of CF.
You could also request a CT scan ,,, and that can help alot,,which is what I'm going to do on the next appt..
Please keep in touch,,Best Wishes to you and your family

 

[MaksNana]

Hi Robin,
I'm sorry to hear your having problems with your little one...I know it can drive you CRAZY !!!!!We have had alot of problems with Makailyn's health this pass year.Her appt. is July 16th,,and I'm hoping to get some answers to try and get her well...
One of the problems I have is Makailyn will cough alot when the doctor walks out of the room or when he is coming ito the room , so he misses the sound of her cough...
Which has been very different the pass few months. I thought it was interesting that you said, they play blowing games to try to get her to cough....At our clinic they don't do anything like that (but I wish they did)cause sometimes you feel like they look at you like you don't know what your talking about.Even though her x-rays will come back with problems...
I was wondering ,,, are they doing cultures on her to see if there are pathogens going on .. Sometimes I think the x-rays care confusing to all the doctors.. I can take an x-ray to one doctor and he'll say OMG,,,and take it to another doctor and he'll say ,well not to bad, it's just part of CF.
You could also request a CT scan ,,, and that can help alot,,which is what I'm going to do on the next appt..
Please keep in touch,,Best Wishes to you and your family

 

[MaksNana]

Hi Robin,
<br />I'm sorry to hear your having problems with your little one...I know it can drive you CRAZY !!!!!We have had alot of problems with Makailyn's health this pass year.Her appt. is July 16th,,and I'm hoping to get some answers to try and get her well...
<br />One of the problems I have is Makailyn will cough alot when the doctor walks out of the room or when he is coming ito the room , so he misses the sound of her cough...
<br />Which has been very different the pass few months. I thought it was interesting that you said, they play blowing games to try to get her to cough....At our clinic they don't do anything like that (but I wish they did)cause sometimes you feel like they look at you like you don't know what your talking about.Even though her x-rays will come back with problems...
<br />I was wondering ,,, are they doing cultures on her to see if there are pathogens going on .. Sometimes I think the x-rays care confusing to all the doctors.. I can take an x-ray to one doctor and he'll say OMG,,,and take it to another doctor and he'll say ,well not to bad, it's just part of CF.
<br />You could also request a CT scan ,,, and that can help alot,,which is what I'm going to do on the next appt..
<br />Please keep in touch,,Best Wishes to you and your family

 

[Ratatosk]

Ditto on the cultures. Also, we've had issues from day one with our local CF clinic and getting dreadful xray reports. Infiltration, thickening of the lung wall and other issues only to go to the CF clinic in the city to find that he's perfectly fine. DS has had to have 2-3 CT scans and one with radioactive isotopes (inhaled) and they showed that his lungs were fine.

Last year after our doctor in the city received a report from the local radiologist about pneumonia/infiltration and ordered a scan, which was NORMAL, we have since decided no more chest xrays at the local level.

So I guess I would request a CT scan.

 

[Ratatosk]

Ditto on the cultures. Also, we've had issues from day one with our local CF clinic and getting dreadful xray reports. Infiltration, thickening of the lung wall and other issues only to go to the CF clinic in the city to find that he's perfectly fine. DS has had to have 2-3 CT scans and one with radioactive isotopes (inhaled) and they showed that his lungs were fine.

Last year after our doctor in the city received a report from the local radiologist about pneumonia/infiltration and ordered a scan, which was NORMAL, we have since decided no more chest xrays at the local level.

So I guess I would request a CT scan.

 

[Ratatosk]

Ditto on the cultures. Also, we've had issues from day one with our local CF clinic and getting dreadful xray reports. Infiltration, thickening of the lung wall and other issues only to go to the CF clinic in the city to find that he's perfectly fine. DS has had to have 2-3 CT scans and one with radioactive isotopes (inhaled) and they showed that his lungs were fine.

Last year after our doctor in the city received a report from the local radiologist about pneumonia/infiltration and ordered a scan, which was NORMAL, we have since decided no more chest xrays at the local level.

So I guess I would request a CT scan.

 

[Ratatosk]

Ditto on the cultures. Also, we've had issues from day one with our local CF clinic and getting dreadful xray reports. Infiltration, thickening of the lung wall and other issues only to go to the CF clinic in the city to find that he's perfectly fine. DS has had to have 2-3 CT scans and one with radioactive isotopes (inhaled) and they showed that his lungs were fine.

Last year after our doctor in the city received a report from the local radiologist about pneumonia/infiltration and ordered a scan, which was NORMAL, we have since decided no more chest xrays at the local level.

So I guess I would request a CT scan.

 

[Ratatosk]

Ditto on the cultures. Also, we've had issues from day one with our local CF clinic and getting dreadful xray reports. Infiltration, thickening of the lung wall and other issues only to go to the CF clinic in the city to find that he's perfectly fine. DS has had to have 2-3 CT scans and one with radioactive isotopes (inhaled) and they showed that his lungs were fine.
<br />
<br />Last year after our doctor in the city received a report from the local radiologist about pneumonia/infiltration and ordered a scan, which was NORMAL, we have since decided no more chest xrays at the local level.
<br />
<br />So I guess I would request a CT scan.