my son had lung issues since birth he was on vent for 6 months in nicu before being weaned to cpap then to oxygen. He was discharged home at 7 1/2 months home on oxygen, apena monitor, and suctioning of his lungs every 2 hours. His twin brother passed at 11 days because his lungs were so bad and scarred that the vent just wouldn't help. So I think everyone is different. My son is now 12 and still a pain in the butt! LOL
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L
lemonstolemonade
Guest
Heather (SmileHS):
We see our regular pedi who is incredibly compassionate and competent about the genetic CF diagnosis. We visit the CF clinic every 6 weeks or so. Our next appointment is next week and it will be interesting to see what happens since all of the RSV stuff came up.
I would try to get a referral somewhere if you can. If not, call your insurance company and see if they will do an exception (tell them you and your pedi don't see eye to eye about a potential diagnosis and that you want to ELIMINATE possibilities and CF may be something that needs to be eliminated).
Thanks for your post. Glad to know I'm not the only RSV fighter out there this season!
Emily
We see our regular pedi who is incredibly compassionate and competent about the genetic CF diagnosis. We visit the CF clinic every 6 weeks or so. Our next appointment is next week and it will be interesting to see what happens since all of the RSV stuff came up.
I would try to get a referral somewhere if you can. If not, call your insurance company and see if they will do an exception (tell them you and your pedi don't see eye to eye about a potential diagnosis and that you want to ELIMINATE possibilities and CF may be something that needs to be eliminated).
Thanks for your post. Glad to know I'm not the only RSV fighter out there this season!
Emily
L
lemonstolemonade
Guest
Heather (SmileHS):
We see our regular pedi who is incredibly compassionate and competent about the genetic CF diagnosis. We visit the CF clinic every 6 weeks or so. Our next appointment is next week and it will be interesting to see what happens since all of the RSV stuff came up.
I would try to get a referral somewhere if you can. If not, call your insurance company and see if they will do an exception (tell them you and your pedi don't see eye to eye about a potential diagnosis and that you want to ELIMINATE possibilities and CF may be something that needs to be eliminated).
Thanks for your post. Glad to know I'm not the only RSV fighter out there this season!
Emily
We see our regular pedi who is incredibly compassionate and competent about the genetic CF diagnosis. We visit the CF clinic every 6 weeks or so. Our next appointment is next week and it will be interesting to see what happens since all of the RSV stuff came up.
I would try to get a referral somewhere if you can. If not, call your insurance company and see if they will do an exception (tell them you and your pedi don't see eye to eye about a potential diagnosis and that you want to ELIMINATE possibilities and CF may be something that needs to be eliminated).
Thanks for your post. Glad to know I'm not the only RSV fighter out there this season!
Emily
L
lemonstolemonade
Guest
Heather (SmileHS):
We see our regular pedi who is incredibly compassionate and competent about the genetic CF diagnosis. We visit the CF clinic every 6 weeks or so. Our next appointment is next week and it will be interesting to see what happens since all of the RSV stuff came up.
I would try to get a referral somewhere if you can. If not, call your insurance company and see if they will do an exception (tell them you and your pedi don't see eye to eye about a potential diagnosis and that you want to ELIMINATE possibilities and CF may be something that needs to be eliminated).
Thanks for your post. Glad to know I'm not the only RSV fighter out there this season!
Emily
We see our regular pedi who is incredibly compassionate and competent about the genetic CF diagnosis. We visit the CF clinic every 6 weeks or so. Our next appointment is next week and it will be interesting to see what happens since all of the RSV stuff came up.
I would try to get a referral somewhere if you can. If not, call your insurance company and see if they will do an exception (tell them you and your pedi don't see eye to eye about a potential diagnosis and that you want to ELIMINATE possibilities and CF may be something that needs to be eliminated).
Thanks for your post. Glad to know I'm not the only RSV fighter out there this season!
Emily
L
lemonstolemonade
Guest
Update:
We had our follow-up post-discharge appointment with the pedi today. She still has wheezing when she exhales and we are continuing the Xopenex 3-4 times a day (as needed). She gets bored with the treatments so we are trying to do them when she is asleep.
My mother is keeping her for the weekend as I had made plans months ago to be in Buffalo this weekend with my sister. Hubby is taking our pre-schooler to his folks. I was planning on taking dd with me to Buffalo, but I think since her pedi is on call this weekend, I'm going to let her just stick around. She's feeling SOOOO much better, I would hate for her to relapse from the extreme cold weather up north (compared to down here in the south).
Thanks for everything you all!
Emily
We had our follow-up post-discharge appointment with the pedi today. She still has wheezing when she exhales and we are continuing the Xopenex 3-4 times a day (as needed). She gets bored with the treatments so we are trying to do them when she is asleep.
My mother is keeping her for the weekend as I had made plans months ago to be in Buffalo this weekend with my sister. Hubby is taking our pre-schooler to his folks. I was planning on taking dd with me to Buffalo, but I think since her pedi is on call this weekend, I'm going to let her just stick around. She's feeling SOOOO much better, I would hate for her to relapse from the extreme cold weather up north (compared to down here in the south).
Thanks for everything you all!
Emily
L
lemonstolemonade
Guest
Update:
We had our follow-up post-discharge appointment with the pedi today. She still has wheezing when she exhales and we are continuing the Xopenex 3-4 times a day (as needed). She gets bored with the treatments so we are trying to do them when she is asleep.
My mother is keeping her for the weekend as I had made plans months ago to be in Buffalo this weekend with my sister. Hubby is taking our pre-schooler to his folks. I was planning on taking dd with me to Buffalo, but I think since her pedi is on call this weekend, I'm going to let her just stick around. She's feeling SOOOO much better, I would hate for her to relapse from the extreme cold weather up north (compared to down here in the south).
Thanks for everything you all!
Emily
We had our follow-up post-discharge appointment with the pedi today. She still has wheezing when she exhales and we are continuing the Xopenex 3-4 times a day (as needed). She gets bored with the treatments so we are trying to do them when she is asleep.
My mother is keeping her for the weekend as I had made plans months ago to be in Buffalo this weekend with my sister. Hubby is taking our pre-schooler to his folks. I was planning on taking dd with me to Buffalo, but I think since her pedi is on call this weekend, I'm going to let her just stick around. She's feeling SOOOO much better, I would hate for her to relapse from the extreme cold weather up north (compared to down here in the south).
Thanks for everything you all!
Emily
L
lemonstolemonade
Guest
Update:
We had our follow-up post-discharge appointment with the pedi today. She still has wheezing when she exhales and we are continuing the Xopenex 3-4 times a day (as needed). She gets bored with the treatments so we are trying to do them when she is asleep.
My mother is keeping her for the weekend as I had made plans months ago to be in Buffalo this weekend with my sister. Hubby is taking our pre-schooler to his folks. I was planning on taking dd with me to Buffalo, but I think since her pedi is on call this weekend, I'm going to let her just stick around. She's feeling SOOOO much better, I would hate for her to relapse from the extreme cold weather up north (compared to down here in the south).
Thanks for everything you all!
Emily
We had our follow-up post-discharge appointment with the pedi today. She still has wheezing when she exhales and we are continuing the Xopenex 3-4 times a day (as needed). She gets bored with the treatments so we are trying to do them when she is asleep.
My mother is keeping her for the weekend as I had made plans months ago to be in Buffalo this weekend with my sister. Hubby is taking our pre-schooler to his folks. I was planning on taking dd with me to Buffalo, but I think since her pedi is on call this weekend, I'm going to let her just stick around. She's feeling SOOOO much better, I would hate for her to relapse from the extreme cold weather up north (compared to down here in the south).
Thanks for everything you all!
Emily