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Who should I call?
- Thread starter martysmom
- Start date
kalebsmommy
New member
We are 4 hours away from our cf clinic so when he has gotten sick we just take him to pediatrician. We put a call in to his cf nurse to let them know whats going on. Everytime our pediatrician has called his cf doc to make sure they were treating him correctly. His pulmonologist has even asked for lung xray and they got it to him. They seem to have good communication and willing to work together so it definetly helps alot. Anyways I always had it in my head pediatrician right away, call in to cf clinic and let them communicate..if he needs to then we drive the 4 hours. Get direct phone numbers to anyone on his cf care team that they will give, trying to go through the office to talk to them is always impossible for us lol curious if anyone else is that far from clinic and what process they take.
kalebsmommy
New member
We are 4 hours away from our cf clinic so when he has gotten sick we just take him to pediatrician. We put a call in to his cf nurse to let them know whats going on. Everytime our pediatrician has called his cf doc to make sure they were treating him correctly. His pulmonologist has even asked for lung xray and they got it to him. They seem to have good communication and willing to work together so it definetly helps alot. Anyways I always had it in my head pediatrician right away, call in to cf clinic and let them communicate..if he needs to then we drive the 4 hours. Get direct phone numbers to anyone on his cf care team that they will give, trying to go through the office to talk to them is always impossible for us lol curious if anyone else is that far from clinic and what process they take.
kalebsmommy
New member
We are 4 hours away from our cf clinic so when he has gotten sick we just take him to pediatrician. We put a call in to his cf nurse to let them know whats going on. Everytime our pediatrician has called his cf doc to make sure they were treating him correctly. His pulmonologist has even asked for lung xray and they got it to him. They seem to have good communication and willing to work together so it definetly helps alot. Anyways I always had it in my head pediatrician right away, call in to cf clinic and let them communicate..if he needs to then we drive the 4 hours. Get direct phone numbers to anyone on his cf care team that they will give, trying to go through the office to talk to them is always impossible for us lol curious if anyone else is that far from clinic and what process they take.
In our case our pediatrician doesn't communicate well (at all) with the CF clinic. And they're the worst about calling back. I'm still waiting for that call back from last October about H1N1 vaccine availability... <img src="i/expressions/face-icon-small-sad.gif" border="0">
And although our cf clinic is 250 miles away, I usually get a call back within a few hours and even if it isn't anything urgent -- such as a question about a medication -- switching from liquid to capsules -- the nurse calls me by the end of the day to keep me informed that they're checking on it and will get back to me in the morning.
And after hours, I call the CF clinic, his service calls him and usually within half an hour the doctor calls me back.
And although our cf clinic is 250 miles away, I usually get a call back within a few hours and even if it isn't anything urgent -- such as a question about a medication -- switching from liquid to capsules -- the nurse calls me by the end of the day to keep me informed that they're checking on it and will get back to me in the morning.
And after hours, I call the CF clinic, his service calls him and usually within half an hour the doctor calls me back.
In our case our pediatrician doesn't communicate well (at all) with the CF clinic. And they're the worst about calling back. I'm still waiting for that call back from last October about H1N1 vaccine availability... <img src="i/expressions/face-icon-small-sad.gif" border="0">
And although our cf clinic is 250 miles away, I usually get a call back within a few hours and even if it isn't anything urgent -- such as a question about a medication -- switching from liquid to capsules -- the nurse calls me by the end of the day to keep me informed that they're checking on it and will get back to me in the morning.
And after hours, I call the CF clinic, his service calls him and usually within half an hour the doctor calls me back.
And although our cf clinic is 250 miles away, I usually get a call back within a few hours and even if it isn't anything urgent -- such as a question about a medication -- switching from liquid to capsules -- the nurse calls me by the end of the day to keep me informed that they're checking on it and will get back to me in the morning.
And after hours, I call the CF clinic, his service calls him and usually within half an hour the doctor calls me back.
In our case our pediatrician doesn't communicate well (at all) with the CF clinic. And they're the worst about calling back. I'm still waiting for that call back from last October about H1N1 vaccine availability... <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />And although our cf clinic is 250 miles away, I usually get a call back within a few hours and even if it isn't anything urgent -- such as a question about a medication -- switching from liquid to capsules -- the nurse calls me by the end of the day to keep me informed that they're checking on it and will get back to me in the morning.
<br />
<br />And after hours, I call the CF clinic, his service calls him and usually within half an hour the doctor calls me back.
<br />
<br />And although our cf clinic is 250 miles away, I usually get a call back within a few hours and even if it isn't anything urgent -- such as a question about a medication -- switching from liquid to capsules -- the nurse calls me by the end of the day to keep me informed that they're checking on it and will get back to me in the morning.
<br />
<br />And after hours, I call the CF clinic, his service calls him and usually within half an hour the doctor calls me back.
You guys are all the best! I seriously don't know what I would do without all this advice!! The CF nurse called back and they are going to put him on some antibiotics for now. I do believe they are going to culture him as well. I also asked her 493875209 questions!! haha and she was very nice. I am sure he will do the mucus thing again. He does it a lot. It is pretty gross but it gives us a really good idea of what's going on. I told her that I want to get the show rolling here before he really gets sick. He was hospitalized in February and May seems to be our month of doom when we usually go back in!! I don't want my baby to sit in that dreaded hospital room ANYMORE!! I hope everyone is doing well!! Oh and at Ratatosk....Mucus is super gross and I feel like we are swimming in it....YUCK!!!
You guys are all the best! I seriously don't know what I would do without all this advice!! The CF nurse called back and they are going to put him on some antibiotics for now. I do believe they are going to culture him as well. I also asked her 493875209 questions!! haha and she was very nice. I am sure he will do the mucus thing again. He does it a lot. It is pretty gross but it gives us a really good idea of what's going on. I told her that I want to get the show rolling here before he really gets sick. He was hospitalized in February and May seems to be our month of doom when we usually go back in!! I don't want my baby to sit in that dreaded hospital room ANYMORE!! I hope everyone is doing well!! Oh and at Ratatosk....Mucus is super gross and I feel like we are swimming in it....YUCK!!!
You guys are all the best! I seriously don't know what I would do without all this advice!! The CF nurse called back and they are going to put him on some antibiotics for now. I do believe they are going to culture him as well. I also asked her 493875209 questions!! haha and she was very nice. I am sure he will do the mucus thing again. He does it a lot. It is pretty gross but it gives us a really good idea of what's going on. I told her that I want to get the show rolling here before he really gets sick. He was hospitalized in February and May seems to be our month of doom when we usually go back in!! I don't want my baby to sit in that dreaded hospital room ANYMORE!! I hope everyone is doing well!! Oh and at Ratatosk....Mucus is super gross and I feel like we are swimming in it....YUCK!!!