Another thing to consider... Is your CF clinic being proactive enough? I really LIKE a couple of the members of the local CF team, they're very nice. But they tend to be more reactive than proactive. They don't suggest CPT/vest until there are symptoms and when DS was a baby, they questioned why we were doing them considering he didn't have symptoms. And it seemed to me they were trying to talk us out of them, kind of a "you've got enough on your plate, you don't really need to do them"...
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Evaluating when to go to the CF center (a novel)
- Thread starter AbbysMama
- Start date
Another thing to consider... Is your CF clinic being proactive enough? I really LIKE a couple of the members of the local CF team, they're very nice. But they tend to be more reactive than proactive. They don't suggest CPT/vest until there are symptoms and when DS was a baby, they questioned why we were doing them considering he didn't have symptoms. And it seemed to me they were trying to talk us out of them, kind of a "you've got enough on your plate, you don't really need to do them"...
Another thing to consider... Is your CF clinic being proactive enough? I really LIKE a couple of the members of the local CF team, they're very nice. But they tend to be more reactive than proactive. They don't suggest CPT/vest until there are symptoms and when DS was a baby, they questioned why we were doing them considering he didn't have symptoms. And it seemed to me they were trying to talk us out of them, kind of a "you've got enough on your plate, you don't really need to do them"...
Another thing to consider... Is your CF clinic being proactive enough? I really LIKE a couple of the members of the local CF team, they're very nice. But they tend to be more reactive than proactive. They don't suggest CPT/vest until there are symptoms and when DS was a baby, they questioned why we were doing them considering he didn't have symptoms. And it seemed to me they were trying to talk us out of them, kind of a "you've got enough on your plate, you don't really need to do them"...
Another thing to consider... Is your CF clinic being proactive enough? I really LIKE a couple of the members of the local CF team, they're very nice. But they tend to be more reactive than proactive. They don't suggest CPT/vest until there are symptoms and when DS was a baby, they questioned why we were doing them considering he didn't have symptoms. And it seemed to me they were trying to talk us out of them, kind of a "you've got enough on your plate, you don't really need to do them"...
HI,
Personally, I rarely if ever deal with a regular doctor where Nathan is concerned, unless it is a broken bone or something that has absolutely no influence on his CF at all, like a broken clavicle.
I understand the COST situation though and it is tough. I did deal with a ped that I really liked a lot when we lived 90 miles away from the clinic. However, he would call the CF team and talk to them while I was present, have me explain things to them that he wanted them to have directly from me and would tell them his recommendations, tell them if he thought they really ought to see him, and change any of his orders if they made different recommendations. He was so GREAT because he had no problem making the long distance call and consulting with the team no matter the time of day or night.
With that said, as frustrating as it may be getting some instructions that they may have been able to give over the phone, they may need to see her to make the correct assessment of her. They may want to see what her PFT's are, need chest x-rays, and so on to really be able to know what they should or shouldn't do. Plus, be aware that when I have been in your situation, we have ended up being admitted on the spot for a tune-up because things were worse than they appeared or they knew that IV's was the only way to clear whatever was going on. I learned to pack our bags when making this trip and be prepared for admission, if I was prepared, we did not always get admitted, if I wasn't prepared, we got admitted every time. Perhaps a little psych on my part but I really adopted the boy scott motto of being prepared for the worst and hope for the best.
I am not sure that this is helping you or not. With the above being said if I were you I would do the following:
1. FOLLOW MY GUT INSTINCTS
2. Ask the ped to call my childs pulmonary doctor and talk to them directly about my child, asking what test they would need and then have him call them back with the results. (IE: blood work, x-rays, and any other that they could do for the CF Team to save you a trip if possible)
3. FOLLOW MY INSTINCTS
4. Start preparing myself for the fact that if she is not getting better, she probably will need a tune-up
5. FOLLOW MY INSTINCTS
6. As was suggested, talk to the pulmonary doc directly and ask him to be honest and tell you what he is thinking and what may or may not be necessary (don't ask about a tune-up, you don't want to give them any ideas that they don't already have, unless your instincts are suggesting that this is really necessary)
7. FOLLOW YOUR INSTINCTS
8. Be honest with the CF Team and tell them that you do not want to come to clinic unless it is absolutely necessary because of the costs and your other conerns.
9. Above all else: FOLLOW YOUR INSTINCTS
Hope this helps and that she gets a lot better in the next couple of days and you won't have to worry about it anymore. You are not being a bad mom, I always second guess myself about whether it is necessary or not to even call the pulmonary team let alone go to clinic.
One other idea, I have my sons pulmonary docs email and email him all the time with symptoms and questions. We both love it because it is easier for me to ask my questions and share my concerns and not worry about whether or not I am bothoring him and he can respond to me when he has time. He always responds within 24 hours usually within a couple of hours, depending on when I send the email. This maybe a great option given the distance and then you by pass the nurse completely and go directly to the source. This also makes it easier for them to make better decisions because you take out the middle man and nothing gets loss in translation from you to him and from him to you because you don't have the nurse forgetting what all you told her and her forgetting what he said as well.
HOpe your child gets better soon,
Personally, I rarely if ever deal with a regular doctor where Nathan is concerned, unless it is a broken bone or something that has absolutely no influence on his CF at all, like a broken clavicle.
I understand the COST situation though and it is tough. I did deal with a ped that I really liked a lot when we lived 90 miles away from the clinic. However, he would call the CF team and talk to them while I was present, have me explain things to them that he wanted them to have directly from me and would tell them his recommendations, tell them if he thought they really ought to see him, and change any of his orders if they made different recommendations. He was so GREAT because he had no problem making the long distance call and consulting with the team no matter the time of day or night.
With that said, as frustrating as it may be getting some instructions that they may have been able to give over the phone, they may need to see her to make the correct assessment of her. They may want to see what her PFT's are, need chest x-rays, and so on to really be able to know what they should or shouldn't do. Plus, be aware that when I have been in your situation, we have ended up being admitted on the spot for a tune-up because things were worse than they appeared or they knew that IV's was the only way to clear whatever was going on. I learned to pack our bags when making this trip and be prepared for admission, if I was prepared, we did not always get admitted, if I wasn't prepared, we got admitted every time. Perhaps a little psych on my part but I really adopted the boy scott motto of being prepared for the worst and hope for the best.
I am not sure that this is helping you or not. With the above being said if I were you I would do the following:
1. FOLLOW MY GUT INSTINCTS
2. Ask the ped to call my childs pulmonary doctor and talk to them directly about my child, asking what test they would need and then have him call them back with the results. (IE: blood work, x-rays, and any other that they could do for the CF Team to save you a trip if possible)
3. FOLLOW MY INSTINCTS
4. Start preparing myself for the fact that if she is not getting better, she probably will need a tune-up
5. FOLLOW MY INSTINCTS
6. As was suggested, talk to the pulmonary doc directly and ask him to be honest and tell you what he is thinking and what may or may not be necessary (don't ask about a tune-up, you don't want to give them any ideas that they don't already have, unless your instincts are suggesting that this is really necessary)
7. FOLLOW YOUR INSTINCTS
8. Be honest with the CF Team and tell them that you do not want to come to clinic unless it is absolutely necessary because of the costs and your other conerns.
9. Above all else: FOLLOW YOUR INSTINCTS
Hope this helps and that she gets a lot better in the next couple of days and you won't have to worry about it anymore. You are not being a bad mom, I always second guess myself about whether it is necessary or not to even call the pulmonary team let alone go to clinic.
One other idea, I have my sons pulmonary docs email and email him all the time with symptoms and questions. We both love it because it is easier for me to ask my questions and share my concerns and not worry about whether or not I am bothoring him and he can respond to me when he has time. He always responds within 24 hours usually within a couple of hours, depending on when I send the email. This maybe a great option given the distance and then you by pass the nurse completely and go directly to the source. This also makes it easier for them to make better decisions because you take out the middle man and nothing gets loss in translation from you to him and from him to you because you don't have the nurse forgetting what all you told her and her forgetting what he said as well.
HOpe your child gets better soon,
HI,
Personally, I rarely if ever deal with a regular doctor where Nathan is concerned, unless it is a broken bone or something that has absolutely no influence on his CF at all, like a broken clavicle.
I understand the COST situation though and it is tough. I did deal with a ped that I really liked a lot when we lived 90 miles away from the clinic. However, he would call the CF team and talk to them while I was present, have me explain things to them that he wanted them to have directly from me and would tell them his recommendations, tell them if he thought they really ought to see him, and change any of his orders if they made different recommendations. He was so GREAT because he had no problem making the long distance call and consulting with the team no matter the time of day or night.
With that said, as frustrating as it may be getting some instructions that they may have been able to give over the phone, they may need to see her to make the correct assessment of her. They may want to see what her PFT's are, need chest x-rays, and so on to really be able to know what they should or shouldn't do. Plus, be aware that when I have been in your situation, we have ended up being admitted on the spot for a tune-up because things were worse than they appeared or they knew that IV's was the only way to clear whatever was going on. I learned to pack our bags when making this trip and be prepared for admission, if I was prepared, we did not always get admitted, if I wasn't prepared, we got admitted every time. Perhaps a little psych on my part but I really adopted the boy scott motto of being prepared for the worst and hope for the best.
I am not sure that this is helping you or not. With the above being said if I were you I would do the following:
1. FOLLOW MY GUT INSTINCTS
2. Ask the ped to call my childs pulmonary doctor and talk to them directly about my child, asking what test they would need and then have him call them back with the results. (IE: blood work, x-rays, and any other that they could do for the CF Team to save you a trip if possible)
3. FOLLOW MY INSTINCTS
4. Start preparing myself for the fact that if she is not getting better, she probably will need a tune-up
5. FOLLOW MY INSTINCTS
6. As was suggested, talk to the pulmonary doc directly and ask him to be honest and tell you what he is thinking and what may or may not be necessary (don't ask about a tune-up, you don't want to give them any ideas that they don't already have, unless your instincts are suggesting that this is really necessary)
7. FOLLOW YOUR INSTINCTS
8. Be honest with the CF Team and tell them that you do not want to come to clinic unless it is absolutely necessary because of the costs and your other conerns.
9. Above all else: FOLLOW YOUR INSTINCTS
Hope this helps and that she gets a lot better in the next couple of days and you won't have to worry about it anymore. You are not being a bad mom, I always second guess myself about whether it is necessary or not to even call the pulmonary team let alone go to clinic.
One other idea, I have my sons pulmonary docs email and email him all the time with symptoms and questions. We both love it because it is easier for me to ask my questions and share my concerns and not worry about whether or not I am bothoring him and he can respond to me when he has time. He always responds within 24 hours usually within a couple of hours, depending on when I send the email. This maybe a great option given the distance and then you by pass the nurse completely and go directly to the source. This also makes it easier for them to make better decisions because you take out the middle man and nothing gets loss in translation from you to him and from him to you because you don't have the nurse forgetting what all you told her and her forgetting what he said as well.
HOpe your child gets better soon,
Personally, I rarely if ever deal with a regular doctor where Nathan is concerned, unless it is a broken bone or something that has absolutely no influence on his CF at all, like a broken clavicle.
I understand the COST situation though and it is tough. I did deal with a ped that I really liked a lot when we lived 90 miles away from the clinic. However, he would call the CF team and talk to them while I was present, have me explain things to them that he wanted them to have directly from me and would tell them his recommendations, tell them if he thought they really ought to see him, and change any of his orders if they made different recommendations. He was so GREAT because he had no problem making the long distance call and consulting with the team no matter the time of day or night.
With that said, as frustrating as it may be getting some instructions that they may have been able to give over the phone, they may need to see her to make the correct assessment of her. They may want to see what her PFT's are, need chest x-rays, and so on to really be able to know what they should or shouldn't do. Plus, be aware that when I have been in your situation, we have ended up being admitted on the spot for a tune-up because things were worse than they appeared or they knew that IV's was the only way to clear whatever was going on. I learned to pack our bags when making this trip and be prepared for admission, if I was prepared, we did not always get admitted, if I wasn't prepared, we got admitted every time. Perhaps a little psych on my part but I really adopted the boy scott motto of being prepared for the worst and hope for the best.
I am not sure that this is helping you or not. With the above being said if I were you I would do the following:
1. FOLLOW MY GUT INSTINCTS
2. Ask the ped to call my childs pulmonary doctor and talk to them directly about my child, asking what test they would need and then have him call them back with the results. (IE: blood work, x-rays, and any other that they could do for the CF Team to save you a trip if possible)
3. FOLLOW MY INSTINCTS
4. Start preparing myself for the fact that if she is not getting better, she probably will need a tune-up
5. FOLLOW MY INSTINCTS
6. As was suggested, talk to the pulmonary doc directly and ask him to be honest and tell you what he is thinking and what may or may not be necessary (don't ask about a tune-up, you don't want to give them any ideas that they don't already have, unless your instincts are suggesting that this is really necessary)
7. FOLLOW YOUR INSTINCTS
8. Be honest with the CF Team and tell them that you do not want to come to clinic unless it is absolutely necessary because of the costs and your other conerns.
9. Above all else: FOLLOW YOUR INSTINCTS
Hope this helps and that she gets a lot better in the next couple of days and you won't have to worry about it anymore. You are not being a bad mom, I always second guess myself about whether it is necessary or not to even call the pulmonary team let alone go to clinic.
One other idea, I have my sons pulmonary docs email and email him all the time with symptoms and questions. We both love it because it is easier for me to ask my questions and share my concerns and not worry about whether or not I am bothoring him and he can respond to me when he has time. He always responds within 24 hours usually within a couple of hours, depending on when I send the email. This maybe a great option given the distance and then you by pass the nurse completely and go directly to the source. This also makes it easier for them to make better decisions because you take out the middle man and nothing gets loss in translation from you to him and from him to you because you don't have the nurse forgetting what all you told her and her forgetting what he said as well.
HOpe your child gets better soon,
HI,
Personally, I rarely if ever deal with a regular doctor where Nathan is concerned, unless it is a broken bone or something that has absolutely no influence on his CF at all, like a broken clavicle.
I understand the COST situation though and it is tough. I did deal with a ped that I really liked a lot when we lived 90 miles away from the clinic. However, he would call the CF team and talk to them while I was present, have me explain things to them that he wanted them to have directly from me and would tell them his recommendations, tell them if he thought they really ought to see him, and change any of his orders if they made different recommendations. He was so GREAT because he had no problem making the long distance call and consulting with the team no matter the time of day or night.
With that said, as frustrating as it may be getting some instructions that they may have been able to give over the phone, they may need to see her to make the correct assessment of her. They may want to see what her PFT's are, need chest x-rays, and so on to really be able to know what they should or shouldn't do. Plus, be aware that when I have been in your situation, we have ended up being admitted on the spot for a tune-up because things were worse than they appeared or they knew that IV's was the only way to clear whatever was going on. I learned to pack our bags when making this trip and be prepared for admission, if I was prepared, we did not always get admitted, if I wasn't prepared, we got admitted every time. Perhaps a little psych on my part but I really adopted the boy scott motto of being prepared for the worst and hope for the best.
I am not sure that this is helping you or not. With the above being said if I were you I would do the following:
1. FOLLOW MY GUT INSTINCTS
2. Ask the ped to call my childs pulmonary doctor and talk to them directly about my child, asking what test they would need and then have him call them back with the results. (IE: blood work, x-rays, and any other that they could do for the CF Team to save you a trip if possible)
3. FOLLOW MY INSTINCTS
4. Start preparing myself for the fact that if she is not getting better, she probably will need a tune-up
5. FOLLOW MY INSTINCTS
6. As was suggested, talk to the pulmonary doc directly and ask him to be honest and tell you what he is thinking and what may or may not be necessary (don't ask about a tune-up, you don't want to give them any ideas that they don't already have, unless your instincts are suggesting that this is really necessary)
7. FOLLOW YOUR INSTINCTS
8. Be honest with the CF Team and tell them that you do not want to come to clinic unless it is absolutely necessary because of the costs and your other conerns.
9. Above all else: FOLLOW YOUR INSTINCTS
Hope this helps and that she gets a lot better in the next couple of days and you won't have to worry about it anymore. You are not being a bad mom, I always second guess myself about whether it is necessary or not to even call the pulmonary team let alone go to clinic.
One other idea, I have my sons pulmonary docs email and email him all the time with symptoms and questions. We both love it because it is easier for me to ask my questions and share my concerns and not worry about whether or not I am bothoring him and he can respond to me when he has time. He always responds within 24 hours usually within a couple of hours, depending on when I send the email. This maybe a great option given the distance and then you by pass the nurse completely and go directly to the source. This also makes it easier for them to make better decisions because you take out the middle man and nothing gets loss in translation from you to him and from him to you because you don't have the nurse forgetting what all you told her and her forgetting what he said as well.
HOpe your child gets better soon,
Personally, I rarely if ever deal with a regular doctor where Nathan is concerned, unless it is a broken bone or something that has absolutely no influence on his CF at all, like a broken clavicle.
I understand the COST situation though and it is tough. I did deal with a ped that I really liked a lot when we lived 90 miles away from the clinic. However, he would call the CF team and talk to them while I was present, have me explain things to them that he wanted them to have directly from me and would tell them his recommendations, tell them if he thought they really ought to see him, and change any of his orders if they made different recommendations. He was so GREAT because he had no problem making the long distance call and consulting with the team no matter the time of day or night.
With that said, as frustrating as it may be getting some instructions that they may have been able to give over the phone, they may need to see her to make the correct assessment of her. They may want to see what her PFT's are, need chest x-rays, and so on to really be able to know what they should or shouldn't do. Plus, be aware that when I have been in your situation, we have ended up being admitted on the spot for a tune-up because things were worse than they appeared or they knew that IV's was the only way to clear whatever was going on. I learned to pack our bags when making this trip and be prepared for admission, if I was prepared, we did not always get admitted, if I wasn't prepared, we got admitted every time. Perhaps a little psych on my part but I really adopted the boy scott motto of being prepared for the worst and hope for the best.
I am not sure that this is helping you or not. With the above being said if I were you I would do the following:
1. FOLLOW MY GUT INSTINCTS
2. Ask the ped to call my childs pulmonary doctor and talk to them directly about my child, asking what test they would need and then have him call them back with the results. (IE: blood work, x-rays, and any other that they could do for the CF Team to save you a trip if possible)
3. FOLLOW MY INSTINCTS
4. Start preparing myself for the fact that if she is not getting better, she probably will need a tune-up
5. FOLLOW MY INSTINCTS
6. As was suggested, talk to the pulmonary doc directly and ask him to be honest and tell you what he is thinking and what may or may not be necessary (don't ask about a tune-up, you don't want to give them any ideas that they don't already have, unless your instincts are suggesting that this is really necessary)
7. FOLLOW YOUR INSTINCTS
8. Be honest with the CF Team and tell them that you do not want to come to clinic unless it is absolutely necessary because of the costs and your other conerns.
9. Above all else: FOLLOW YOUR INSTINCTS
Hope this helps and that she gets a lot better in the next couple of days and you won't have to worry about it anymore. You are not being a bad mom, I always second guess myself about whether it is necessary or not to even call the pulmonary team let alone go to clinic.
One other idea, I have my sons pulmonary docs email and email him all the time with symptoms and questions. We both love it because it is easier for me to ask my questions and share my concerns and not worry about whether or not I am bothoring him and he can respond to me when he has time. He always responds within 24 hours usually within a couple of hours, depending on when I send the email. This maybe a great option given the distance and then you by pass the nurse completely and go directly to the source. This also makes it easier for them to make better decisions because you take out the middle man and nothing gets loss in translation from you to him and from him to you because you don't have the nurse forgetting what all you told her and her forgetting what he said as well.
HOpe your child gets better soon,
HI,
Personally, I rarely if ever deal with a regular doctor where Nathan is concerned, unless it is a broken bone or something that has absolutely no influence on his CF at all, like a broken clavicle.
I understand the COST situation though and it is tough. I did deal with a ped that I really liked a lot when we lived 90 miles away from the clinic. However, he would call the CF team and talk to them while I was present, have me explain things to them that he wanted them to have directly from me and would tell them his recommendations, tell them if he thought they really ought to see him, and change any of his orders if they made different recommendations. He was so GREAT because he had no problem making the long distance call and consulting with the team no matter the time of day or night.
With that said, as frustrating as it may be getting some instructions that they may have been able to give over the phone, they may need to see her to make the correct assessment of her. They may want to see what her PFT's are, need chest x-rays, and so on to really be able to know what they should or shouldn't do. Plus, be aware that when I have been in your situation, we have ended up being admitted on the spot for a tune-up because things were worse than they appeared or they knew that IV's was the only way to clear whatever was going on. I learned to pack our bags when making this trip and be prepared for admission, if I was prepared, we did not always get admitted, if I wasn't prepared, we got admitted every time. Perhaps a little psych on my part but I really adopted the boy scott motto of being prepared for the worst and hope for the best.
I am not sure that this is helping you or not. With the above being said if I were you I would do the following:
1. FOLLOW MY GUT INSTINCTS
2. Ask the ped to call my childs pulmonary doctor and talk to them directly about my child, asking what test they would need and then have him call them back with the results. (IE: blood work, x-rays, and any other that they could do for the CF Team to save you a trip if possible)
3. FOLLOW MY INSTINCTS
4. Start preparing myself for the fact that if she is not getting better, she probably will need a tune-up
5. FOLLOW MY INSTINCTS
6. As was suggested, talk to the pulmonary doc directly and ask him to be honest and tell you what he is thinking and what may or may not be necessary (don't ask about a tune-up, you don't want to give them any ideas that they don't already have, unless your instincts are suggesting that this is really necessary)
7. FOLLOW YOUR INSTINCTS
8. Be honest with the CF Team and tell them that you do not want to come to clinic unless it is absolutely necessary because of the costs and your other conerns.
9. Above all else: FOLLOW YOUR INSTINCTS
Hope this helps and that she gets a lot better in the next couple of days and you won't have to worry about it anymore. You are not being a bad mom, I always second guess myself about whether it is necessary or not to even call the pulmonary team let alone go to clinic.
One other idea, I have my sons pulmonary docs email and email him all the time with symptoms and questions. We both love it because it is easier for me to ask my questions and share my concerns and not worry about whether or not I am bothoring him and he can respond to me when he has time. He always responds within 24 hours usually within a couple of hours, depending on when I send the email. This maybe a great option given the distance and then you by pass the nurse completely and go directly to the source. This also makes it easier for them to make better decisions because you take out the middle man and nothing gets loss in translation from you to him and from him to you because you don't have the nurse forgetting what all you told her and her forgetting what he said as well.
HOpe your child gets better soon,
Personally, I rarely if ever deal with a regular doctor where Nathan is concerned, unless it is a broken bone or something that has absolutely no influence on his CF at all, like a broken clavicle.
I understand the COST situation though and it is tough. I did deal with a ped that I really liked a lot when we lived 90 miles away from the clinic. However, he would call the CF team and talk to them while I was present, have me explain things to them that he wanted them to have directly from me and would tell them his recommendations, tell them if he thought they really ought to see him, and change any of his orders if they made different recommendations. He was so GREAT because he had no problem making the long distance call and consulting with the team no matter the time of day or night.
With that said, as frustrating as it may be getting some instructions that they may have been able to give over the phone, they may need to see her to make the correct assessment of her. They may want to see what her PFT's are, need chest x-rays, and so on to really be able to know what they should or shouldn't do. Plus, be aware that when I have been in your situation, we have ended up being admitted on the spot for a tune-up because things were worse than they appeared or they knew that IV's was the only way to clear whatever was going on. I learned to pack our bags when making this trip and be prepared for admission, if I was prepared, we did not always get admitted, if I wasn't prepared, we got admitted every time. Perhaps a little psych on my part but I really adopted the boy scott motto of being prepared for the worst and hope for the best.
I am not sure that this is helping you or not. With the above being said if I were you I would do the following:
1. FOLLOW MY GUT INSTINCTS
2. Ask the ped to call my childs pulmonary doctor and talk to them directly about my child, asking what test they would need and then have him call them back with the results. (IE: blood work, x-rays, and any other that they could do for the CF Team to save you a trip if possible)
3. FOLLOW MY INSTINCTS
4. Start preparing myself for the fact that if she is not getting better, she probably will need a tune-up
5. FOLLOW MY INSTINCTS
6. As was suggested, talk to the pulmonary doc directly and ask him to be honest and tell you what he is thinking and what may or may not be necessary (don't ask about a tune-up, you don't want to give them any ideas that they don't already have, unless your instincts are suggesting that this is really necessary)
7. FOLLOW YOUR INSTINCTS
8. Be honest with the CF Team and tell them that you do not want to come to clinic unless it is absolutely necessary because of the costs and your other conerns.
9. Above all else: FOLLOW YOUR INSTINCTS
Hope this helps and that she gets a lot better in the next couple of days and you won't have to worry about it anymore. You are not being a bad mom, I always second guess myself about whether it is necessary or not to even call the pulmonary team let alone go to clinic.
One other idea, I have my sons pulmonary docs email and email him all the time with symptoms and questions. We both love it because it is easier for me to ask my questions and share my concerns and not worry about whether or not I am bothoring him and he can respond to me when he has time. He always responds within 24 hours usually within a couple of hours, depending on when I send the email. This maybe a great option given the distance and then you by pass the nurse completely and go directly to the source. This also makes it easier for them to make better decisions because you take out the middle man and nothing gets loss in translation from you to him and from him to you because you don't have the nurse forgetting what all you told her and her forgetting what he said as well.
HOpe your child gets better soon,
HI,
<br />
<br />Personally, I rarely if ever deal with a regular doctor where Nathan is concerned, unless it is a broken bone or something that has absolutely no influence on his CF at all, like a broken clavicle.
<br />
<br />I understand the COST situation though and it is tough. I did deal with a ped that I really liked a lot when we lived 90 miles away from the clinic. However, he would call the CF team and talk to them while I was present, have me explain things to them that he wanted them to have directly from me and would tell them his recommendations, tell them if he thought they really ought to see him, and change any of his orders if they made different recommendations. He was so GREAT because he had no problem making the long distance call and consulting with the team no matter the time of day or night.
<br />
<br />With that said, as frustrating as it may be getting some instructions that they may have been able to give over the phone, they may need to see her to make the correct assessment of her. They may want to see what her PFT's are, need chest x-rays, and so on to really be able to know what they should or shouldn't do. Plus, be aware that when I have been in your situation, we have ended up being admitted on the spot for a tune-up because things were worse than they appeared or they knew that IV's was the only way to clear whatever was going on. I learned to pack our bags when making this trip and be prepared for admission, if I was prepared, we did not always get admitted, if I wasn't prepared, we got admitted every time. Perhaps a little psych on my part but I really adopted the boy scott motto of being prepared for the worst and hope for the best.
<br />
<br />I am not sure that this is helping you or not. With the above being said if I were you I would do the following:
<br />
<br />1. FOLLOW MY GUT INSTINCTS
<br />2. Ask the ped to call my childs pulmonary doctor and talk to them directly about my child, asking what test they would need and then have him call them back with the results. (IE: blood work, x-rays, and any other that they could do for the CF Team to save you a trip if possible)
<br />3. FOLLOW MY INSTINCTS
<br />4. Start preparing myself for the fact that if she is not getting better, she probably will need a tune-up
<br />5. FOLLOW MY INSTINCTS
<br />6. As was suggested, talk to the pulmonary doc directly and ask him to be honest and tell you what he is thinking and what may or may not be necessary (don't ask about a tune-up, you don't want to give them any ideas that they don't already have, unless your instincts are suggesting that this is really necessary)
<br />7. FOLLOW YOUR INSTINCTS
<br />8. Be honest with the CF Team and tell them that you do not want to come to clinic unless it is absolutely necessary because of the costs and your other conerns.
<br />9. Above all else: FOLLOW YOUR INSTINCTS
<br />
<br />Hope this helps and that she gets a lot better in the next couple of days and you won't have to worry about it anymore. You are not being a bad mom, I always second guess myself about whether it is necessary or not to even call the pulmonary team let alone go to clinic.
<br />
<br />One other idea, I have my sons pulmonary docs email and email him all the time with symptoms and questions. We both love it because it is easier for me to ask my questions and share my concerns and not worry about whether or not I am bothoring him and he can respond to me when he has time. He always responds within 24 hours usually within a couple of hours, depending on when I send the email. This maybe a great option given the distance and then you by pass the nurse completely and go directly to the source. This also makes it easier for them to make better decisions because you take out the middle man and nothing gets loss in translation from you to him and from him to you because you don't have the nurse forgetting what all you told her and her forgetting what he said as well.
<br />
<br />HOpe your child gets better soon,
<br />
<br />
<br />Personally, I rarely if ever deal with a regular doctor where Nathan is concerned, unless it is a broken bone or something that has absolutely no influence on his CF at all, like a broken clavicle.
<br />
<br />I understand the COST situation though and it is tough. I did deal with a ped that I really liked a lot when we lived 90 miles away from the clinic. However, he would call the CF team and talk to them while I was present, have me explain things to them that he wanted them to have directly from me and would tell them his recommendations, tell them if he thought they really ought to see him, and change any of his orders if they made different recommendations. He was so GREAT because he had no problem making the long distance call and consulting with the team no matter the time of day or night.
<br />
<br />With that said, as frustrating as it may be getting some instructions that they may have been able to give over the phone, they may need to see her to make the correct assessment of her. They may want to see what her PFT's are, need chest x-rays, and so on to really be able to know what they should or shouldn't do. Plus, be aware that when I have been in your situation, we have ended up being admitted on the spot for a tune-up because things were worse than they appeared or they knew that IV's was the only way to clear whatever was going on. I learned to pack our bags when making this trip and be prepared for admission, if I was prepared, we did not always get admitted, if I wasn't prepared, we got admitted every time. Perhaps a little psych on my part but I really adopted the boy scott motto of being prepared for the worst and hope for the best.
<br />
<br />I am not sure that this is helping you or not. With the above being said if I were you I would do the following:
<br />
<br />1. FOLLOW MY GUT INSTINCTS
<br />2. Ask the ped to call my childs pulmonary doctor and talk to them directly about my child, asking what test they would need and then have him call them back with the results. (IE: blood work, x-rays, and any other that they could do for the CF Team to save you a trip if possible)
<br />3. FOLLOW MY INSTINCTS
<br />4. Start preparing myself for the fact that if she is not getting better, she probably will need a tune-up
<br />5. FOLLOW MY INSTINCTS
<br />6. As was suggested, talk to the pulmonary doc directly and ask him to be honest and tell you what he is thinking and what may or may not be necessary (don't ask about a tune-up, you don't want to give them any ideas that they don't already have, unless your instincts are suggesting that this is really necessary)
<br />7. FOLLOW YOUR INSTINCTS
<br />8. Be honest with the CF Team and tell them that you do not want to come to clinic unless it is absolutely necessary because of the costs and your other conerns.
<br />9. Above all else: FOLLOW YOUR INSTINCTS
<br />
<br />Hope this helps and that she gets a lot better in the next couple of days and you won't have to worry about it anymore. You are not being a bad mom, I always second guess myself about whether it is necessary or not to even call the pulmonary team let alone go to clinic.
<br />
<br />One other idea, I have my sons pulmonary docs email and email him all the time with symptoms and questions. We both love it because it is easier for me to ask my questions and share my concerns and not worry about whether or not I am bothoring him and he can respond to me when he has time. He always responds within 24 hours usually within a couple of hours, depending on when I send the email. This maybe a great option given the distance and then you by pass the nurse completely and go directly to the source. This also makes it easier for them to make better decisions because you take out the middle man and nothing gets loss in translation from you to him and from him to you because you don't have the nurse forgetting what all you told her and her forgetting what he said as well.
<br />
<br />HOpe your child gets better soon,
<br />
I agree with Tonya. If you can get the two docs to communicate with one another, it would be great. I also agree that talking directly to the CF doc is best. You are not being a bad mother for worrying over the expense of the trip, and trying to avoid it if necessary. As a matter of fact, riding in a car always makes Jordan's ears hurt worse when they are infected.
If the ped isn't experienced enough to listen to Abby, maybe there is a pulmo in your area who is? I hope you can take care of this locally, and avoid the trip. Keep us posted.
Stacey
If the ped isn't experienced enough to listen to Abby, maybe there is a pulmo in your area who is? I hope you can take care of this locally, and avoid the trip. Keep us posted.
Stacey
I agree with Tonya. If you can get the two docs to communicate with one another, it would be great. I also agree that talking directly to the CF doc is best. You are not being a bad mother for worrying over the expense of the trip, and trying to avoid it if necessary. As a matter of fact, riding in a car always makes Jordan's ears hurt worse when they are infected.
If the ped isn't experienced enough to listen to Abby, maybe there is a pulmo in your area who is? I hope you can take care of this locally, and avoid the trip. Keep us posted.
Stacey
If the ped isn't experienced enough to listen to Abby, maybe there is a pulmo in your area who is? I hope you can take care of this locally, and avoid the trip. Keep us posted.
Stacey
I agree with Tonya. If you can get the two docs to communicate with one another, it would be great. I also agree that talking directly to the CF doc is best. You are not being a bad mother for worrying over the expense of the trip, and trying to avoid it if necessary. As a matter of fact, riding in a car always makes Jordan's ears hurt worse when they are infected.
If the ped isn't experienced enough to listen to Abby, maybe there is a pulmo in your area who is? I hope you can take care of this locally, and avoid the trip. Keep us posted.
Stacey
If the ped isn't experienced enough to listen to Abby, maybe there is a pulmo in your area who is? I hope you can take care of this locally, and avoid the trip. Keep us posted.
Stacey
I agree with Tonya. If you can get the two docs to communicate with one another, it would be great. I also agree that talking directly to the CF doc is best. You are not being a bad mother for worrying over the expense of the trip, and trying to avoid it if necessary. As a matter of fact, riding in a car always makes Jordan's ears hurt worse when they are infected.
If the ped isn't experienced enough to listen to Abby, maybe there is a pulmo in your area who is? I hope you can take care of this locally, and avoid the trip. Keep us posted.
Stacey
If the ped isn't experienced enough to listen to Abby, maybe there is a pulmo in your area who is? I hope you can take care of this locally, and avoid the trip. Keep us posted.
Stacey
I agree with Tonya. If you can get the two docs to communicate with one another, it would be great. I also agree that talking directly to the CF doc is best. You are not being a bad mother for worrying over the expense of the trip, and trying to avoid it if necessary. As a matter of fact, riding in a car always makes Jordan's ears hurt worse when they are infected.
<br />
<br />If the ped isn't experienced enough to listen to Abby, maybe there is a pulmo in your area who is? I hope you can take care of this locally, and avoid the trip. Keep us posted.
<br />
<br />Stacey
<br />
<br />If the ped isn't experienced enough to listen to Abby, maybe there is a pulmo in your area who is? I hope you can take care of this locally, and avoid the trip. Keep us posted.
<br />
<br />Stacey
Our CF Center is 180 miles each way. There are no closer pulmonologists, so we are kind of stuck. Our PCP is totally uncomfortable with Becca(age 1) and her CF, we have tried several other PCP's but none of them are any better. We pretty much call our CF doctor about everything. She has even given me her cell number although I have not ever used it. We pretty much go to the CF center everytime there is an issue, alot of it is because they are so uncomfortable with Becca in town and do not do what they need to, they have no clue how to handle her unless all she needs is a little bit of IV fluid. Part of the reason we now always just drive to our CF center is in January Becca had a virus and the ER here was so uncomfortable with her they intubated her after telling me they had talked to our CF doctor and she had said to do that. They then transferred us to the CF center in the ambulance, when we got there our doctor was furious because she had specifically told them not to intubate. I have decided it is worth the expense and hassle of driving to our center to avoid another week in the ICU.
I am on the same page with Nathan's mom. We always pack to stay. I always bring our vest, toys, snacks and a suitcase with at least 4 days worth of clothes for both of us when ever we even have an appointment. I also always make sure I have a plan for childcare for my 3 year old who does not have CF in case we can not get back home for a few days. (I am a single parent, so I have to make sure I have other arrangements.)
As far as the expense goes. I had been paying all of it, but found our recently that the regional center will pay for gas and lodging when ever you have to travel outside of the county you live in for medical care. All counties in every state has a regional center. I really had to fight to have Becca evaluated, because she in not developmentally delayed, but they will cover kids who are at risk for delay and CF is one of the qualifiing conditions for risk. The regional center is also paying for Beccas vest, her nutritional supplements and formula (her CF doctor wants her on formula until she is 3, a membership to an indoor kids gym so she can exercise when it is to hot out and for some repite daycare-10 hours a month. It has really helped with our travel and lodging expense, because they arrange for us to stay at either the Ronald McDonald house or a hotel every time we go for a clinic appt. I don't have to push it to drive there and back in the same day. They also pay per mile, they pay 42 cents, which helps cover the gas. They even pay when we have to go on an urgent basis not just regular stuff.
I am on the same page with Nathan's mom. We always pack to stay. I always bring our vest, toys, snacks and a suitcase with at least 4 days worth of clothes for both of us when ever we even have an appointment. I also always make sure I have a plan for childcare for my 3 year old who does not have CF in case we can not get back home for a few days. (I am a single parent, so I have to make sure I have other arrangements.)
As far as the expense goes. I had been paying all of it, but found our recently that the regional center will pay for gas and lodging when ever you have to travel outside of the county you live in for medical care. All counties in every state has a regional center. I really had to fight to have Becca evaluated, because she in not developmentally delayed, but they will cover kids who are at risk for delay and CF is one of the qualifiing conditions for risk. The regional center is also paying for Beccas vest, her nutritional supplements and formula (her CF doctor wants her on formula until she is 3, a membership to an indoor kids gym so she can exercise when it is to hot out and for some repite daycare-10 hours a month. It has really helped with our travel and lodging expense, because they arrange for us to stay at either the Ronald McDonald house or a hotel every time we go for a clinic appt. I don't have to push it to drive there and back in the same day. They also pay per mile, they pay 42 cents, which helps cover the gas. They even pay when we have to go on an urgent basis not just regular stuff.
Our CF Center is 180 miles each way. There are no closer pulmonologists, so we are kind of stuck. Our PCP is totally uncomfortable with Becca(age 1) and her CF, we have tried several other PCP's but none of them are any better. We pretty much call our CF doctor about everything. She has even given me her cell number although I have not ever used it. We pretty much go to the CF center everytime there is an issue, alot of it is because they are so uncomfortable with Becca in town and do not do what they need to, they have no clue how to handle her unless all she needs is a little bit of IV fluid. Part of the reason we now always just drive to our CF center is in January Becca had a virus and the ER here was so uncomfortable with her they intubated her after telling me they had talked to our CF doctor and she had said to do that. They then transferred us to the CF center in the ambulance, when we got there our doctor was furious because she had specifically told them not to intubate. I have decided it is worth the expense and hassle of driving to our center to avoid another week in the ICU.
I am on the same page with Nathan's mom. We always pack to stay. I always bring our vest, toys, snacks and a suitcase with at least 4 days worth of clothes for both of us when ever we even have an appointment. I also always make sure I have a plan for childcare for my 3 year old who does not have CF in case we can not get back home for a few days. (I am a single parent, so I have to make sure I have other arrangements.)
As far as the expense goes. I had been paying all of it, but found our recently that the regional center will pay for gas and lodging when ever you have to travel outside of the county you live in for medical care. All counties in every state has a regional center. I really had to fight to have Becca evaluated, because she in not developmentally delayed, but they will cover kids who are at risk for delay and CF is one of the qualifiing conditions for risk. The regional center is also paying for Beccas vest, her nutritional supplements and formula (her CF doctor wants her on formula until she is 3, a membership to an indoor kids gym so she can exercise when it is to hot out and for some repite daycare-10 hours a month. It has really helped with our travel and lodging expense, because they arrange for us to stay at either the Ronald McDonald house or a hotel every time we go for a clinic appt. I don't have to push it to drive there and back in the same day. They also pay per mile, they pay 42 cents, which helps cover the gas. They even pay when we have to go on an urgent basis not just regular stuff.
I am on the same page with Nathan's mom. We always pack to stay. I always bring our vest, toys, snacks and a suitcase with at least 4 days worth of clothes for both of us when ever we even have an appointment. I also always make sure I have a plan for childcare for my 3 year old who does not have CF in case we can not get back home for a few days. (I am a single parent, so I have to make sure I have other arrangements.)
As far as the expense goes. I had been paying all of it, but found our recently that the regional center will pay for gas and lodging when ever you have to travel outside of the county you live in for medical care. All counties in every state has a regional center. I really had to fight to have Becca evaluated, because she in not developmentally delayed, but they will cover kids who are at risk for delay and CF is one of the qualifiing conditions for risk. The regional center is also paying for Beccas vest, her nutritional supplements and formula (her CF doctor wants her on formula until she is 3, a membership to an indoor kids gym so she can exercise when it is to hot out and for some repite daycare-10 hours a month. It has really helped with our travel and lodging expense, because they arrange for us to stay at either the Ronald McDonald house or a hotel every time we go for a clinic appt. I don't have to push it to drive there and back in the same day. They also pay per mile, they pay 42 cents, which helps cover the gas. They even pay when we have to go on an urgent basis not just regular stuff.
Our CF Center is 180 miles each way. There are no closer pulmonologists, so we are kind of stuck. Our PCP is totally uncomfortable with Becca(age 1) and her CF, we have tried several other PCP's but none of them are any better. We pretty much call our CF doctor about everything. She has even given me her cell number although I have not ever used it. We pretty much go to the CF center everytime there is an issue, alot of it is because they are so uncomfortable with Becca in town and do not do what they need to, they have no clue how to handle her unless all she needs is a little bit of IV fluid. Part of the reason we now always just drive to our CF center is in January Becca had a virus and the ER here was so uncomfortable with her they intubated her after telling me they had talked to our CF doctor and she had said to do that. They then transferred us to the CF center in the ambulance, when we got there our doctor was furious because she had specifically told them not to intubate. I have decided it is worth the expense and hassle of driving to our center to avoid another week in the ICU.
I am on the same page with Nathan's mom. We always pack to stay. I always bring our vest, toys, snacks and a suitcase with at least 4 days worth of clothes for both of us when ever we even have an appointment. I also always make sure I have a plan for childcare for my 3 year old who does not have CF in case we can not get back home for a few days. (I am a single parent, so I have to make sure I have other arrangements.)
As far as the expense goes. I had been paying all of it, but found our recently that the regional center will pay for gas and lodging when ever you have to travel outside of the county you live in for medical care. All counties in every state has a regional center. I really had to fight to have Becca evaluated, because she in not developmentally delayed, but they will cover kids who are at risk for delay and CF is one of the qualifiing conditions for risk. The regional center is also paying for Beccas vest, her nutritional supplements and formula (her CF doctor wants her on formula until she is 3, a membership to an indoor kids gym so she can exercise when it is to hot out and for some repite daycare-10 hours a month. It has really helped with our travel and lodging expense, because they arrange for us to stay at either the Ronald McDonald house or a hotel every time we go for a clinic appt. I don't have to push it to drive there and back in the same day. They also pay per mile, they pay 42 cents, which helps cover the gas. They even pay when we have to go on an urgent basis not just regular stuff.
I am on the same page with Nathan's mom. We always pack to stay. I always bring our vest, toys, snacks and a suitcase with at least 4 days worth of clothes for both of us when ever we even have an appointment. I also always make sure I have a plan for childcare for my 3 year old who does not have CF in case we can not get back home for a few days. (I am a single parent, so I have to make sure I have other arrangements.)
As far as the expense goes. I had been paying all of it, but found our recently that the regional center will pay for gas and lodging when ever you have to travel outside of the county you live in for medical care. All counties in every state has a regional center. I really had to fight to have Becca evaluated, because she in not developmentally delayed, but they will cover kids who are at risk for delay and CF is one of the qualifiing conditions for risk. The regional center is also paying for Beccas vest, her nutritional supplements and formula (her CF doctor wants her on formula until she is 3, a membership to an indoor kids gym so she can exercise when it is to hot out and for some repite daycare-10 hours a month. It has really helped with our travel and lodging expense, because they arrange for us to stay at either the Ronald McDonald house or a hotel every time we go for a clinic appt. I don't have to push it to drive there and back in the same day. They also pay per mile, they pay 42 cents, which helps cover the gas. They even pay when we have to go on an urgent basis not just regular stuff.
Our CF Center is 180 miles each way. There are no closer pulmonologists, so we are kind of stuck. Our PCP is totally uncomfortable with Becca(age 1) and her CF, we have tried several other PCP's but none of them are any better. We pretty much call our CF doctor about everything. She has even given me her cell number although I have not ever used it. We pretty much go to the CF center everytime there is an issue, alot of it is because they are so uncomfortable with Becca in town and do not do what they need to, they have no clue how to handle her unless all she needs is a little bit of IV fluid. Part of the reason we now always just drive to our CF center is in January Becca had a virus and the ER here was so uncomfortable with her they intubated her after telling me they had talked to our CF doctor and she had said to do that. They then transferred us to the CF center in the ambulance, when we got there our doctor was furious because she had specifically told them not to intubate. I have decided it is worth the expense and hassle of driving to our center to avoid another week in the ICU.
I am on the same page with Nathan's mom. We always pack to stay. I always bring our vest, toys, snacks and a suitcase with at least 4 days worth of clothes for both of us when ever we even have an appointment. I also always make sure I have a plan for childcare for my 3 year old who does not have CF in case we can not get back home for a few days. (I am a single parent, so I have to make sure I have other arrangements.)
As far as the expense goes. I had been paying all of it, but found our recently that the regional center will pay for gas and lodging when ever you have to travel outside of the county you live in for medical care. All counties in every state has a regional center. I really had to fight to have Becca evaluated, because she in not developmentally delayed, but they will cover kids who are at risk for delay and CF is one of the qualifiing conditions for risk. The regional center is also paying for Beccas vest, her nutritional supplements and formula (her CF doctor wants her on formula until she is 3, a membership to an indoor kids gym so she can exercise when it is to hot out and for some repite daycare-10 hours a month. It has really helped with our travel and lodging expense, because they arrange for us to stay at either the Ronald McDonald house or a hotel every time we go for a clinic appt. I don't have to push it to drive there and back in the same day. They also pay per mile, they pay 42 cents, which helps cover the gas. They even pay when we have to go on an urgent basis not just regular stuff.
I am on the same page with Nathan's mom. We always pack to stay. I always bring our vest, toys, snacks and a suitcase with at least 4 days worth of clothes for both of us when ever we even have an appointment. I also always make sure I have a plan for childcare for my 3 year old who does not have CF in case we can not get back home for a few days. (I am a single parent, so I have to make sure I have other arrangements.)
As far as the expense goes. I had been paying all of it, but found our recently that the regional center will pay for gas and lodging when ever you have to travel outside of the county you live in for medical care. All counties in every state has a regional center. I really had to fight to have Becca evaluated, because she in not developmentally delayed, but they will cover kids who are at risk for delay and CF is one of the qualifiing conditions for risk. The regional center is also paying for Beccas vest, her nutritional supplements and formula (her CF doctor wants her on formula until she is 3, a membership to an indoor kids gym so she can exercise when it is to hot out and for some repite daycare-10 hours a month. It has really helped with our travel and lodging expense, because they arrange for us to stay at either the Ronald McDonald house or a hotel every time we go for a clinic appt. I don't have to push it to drive there and back in the same day. They also pay per mile, they pay 42 cents, which helps cover the gas. They even pay when we have to go on an urgent basis not just regular stuff.
Our CF Center is 180 miles each way. There are no closer pulmonologists, so we are kind of stuck. Our PCP is totally uncomfortable with Becca(age 1) and her CF, we have tried several other PCP's but none of them are any better. We pretty much call our CF doctor about everything. She has even given me her cell number although I have not ever used it. We pretty much go to the CF center everytime there is an issue, alot of it is because they are so uncomfortable with Becca in town and do not do what they need to, they have no clue how to handle her unless all she needs is a little bit of IV fluid. Part of the reason we now always just drive to our CF center is in January Becca had a virus and the ER here was so uncomfortable with her they intubated her after telling me they had talked to our CF doctor and she had said to do that. They then transferred us to the CF center in the ambulance, when we got there our doctor was furious because she had specifically told them not to intubate. I have decided it is worth the expense and hassle of driving to our center to avoid another week in the ICU.
<br />
<br />I am on the same page with Nathan's mom. We always pack to stay. I always bring our vest, toys, snacks and a suitcase with at least 4 days worth of clothes for both of us when ever we even have an appointment. I also always make sure I have a plan for childcare for my 3 year old who does not have CF in case we can not get back home for a few days. (I am a single parent, so I have to make sure I have other arrangements.)
<br />
<br />As far as the expense goes. I had been paying all of it, but found our recently that the regional center will pay for gas and lodging when ever you have to travel outside of the county you live in for medical care. All counties in every state has a regional center. I really had to fight to have Becca evaluated, because she in not developmentally delayed, but they will cover kids who are at risk for delay and CF is one of the qualifiing conditions for risk. The regional center is also paying for Beccas vest, her nutritional supplements and formula (her CF doctor wants her on formula until she is 3, a membership to an indoor kids gym so she can exercise when it is to hot out and for some repite daycare-10 hours a month. It has really helped with our travel and lodging expense, because they arrange for us to stay at either the Ronald McDonald house or a hotel every time we go for a clinic appt. I don't have to push it to drive there and back in the same day. They also pay per mile, they pay 42 cents, which helps cover the gas. They even pay when we have to go on an urgent basis not just regular stuff.
<br />
<br />I am on the same page with Nathan's mom. We always pack to stay. I always bring our vest, toys, snacks and a suitcase with at least 4 days worth of clothes for both of us when ever we even have an appointment. I also always make sure I have a plan for childcare for my 3 year old who does not have CF in case we can not get back home for a few days. (I am a single parent, so I have to make sure I have other arrangements.)
<br />
<br />As far as the expense goes. I had been paying all of it, but found our recently that the regional center will pay for gas and lodging when ever you have to travel outside of the county you live in for medical care. All counties in every state has a regional center. I really had to fight to have Becca evaluated, because she in not developmentally delayed, but they will cover kids who are at risk for delay and CF is one of the qualifiing conditions for risk. The regional center is also paying for Beccas vest, her nutritional supplements and formula (her CF doctor wants her on formula until she is 3, a membership to an indoor kids gym so she can exercise when it is to hot out and for some repite daycare-10 hours a month. It has really helped with our travel and lodging expense, because they arrange for us to stay at either the Ronald McDonald house or a hotel every time we go for a clinic appt. I don't have to push it to drive there and back in the same day. They also pay per mile, they pay 42 cents, which helps cover the gas. They even pay when we have to go on an urgent basis not just regular stuff.