Thanks for all the responses. To try to answer a few questions...
Kaitlyn eats very well. She is at a very good weight.
As far as activity she doesn't do any "regular" workouts. She is active though... she played volleyball this year in school but that season just ended. I will try to get her to use my eliptical machine more often.
As for the vest, no, she does not participate. She just sits there and waits for it to be over. I have tried and tried to get her to cough and get the stuff out but she is very stubborn. She thinks its "gross"... and 13 year old girls are not very easy to persuade. I was thinking of seeing if the insurance would pay for a respiratory therapist to come to the house and work with the girls on coughing/huffing techniques... I know that is something we need to work on.
I've been having her do treatments every 4 hours during the day (including albuterol)... she does have asthma which kicks in when she gets sick and makes things worse.
I finally heard from the dr and she said Kaitlyn needs IV's but the hospital in San Antonio is completely booked. She said I could go to Fort Worth and have her admitted there (we have seen the CF docs up there several times as well). I am going to see how she is tonight and make final plans tomorrow.
Oh, by the way, I called the school nurse and asked if Kaitlyn does go on IV's if they can do home bound so she doesn't have to go to school. The nurse said she thought that would be a great idea because there is so much going around at school right now that she does not need to be there. She said they've had 5 cases on pneumonia this week and tons of upper respiratory illnesses going around...
Kaitlyn eats very well. She is at a very good weight.
As far as activity she doesn't do any "regular" workouts. She is active though... she played volleyball this year in school but that season just ended. I will try to get her to use my eliptical machine more often.
As for the vest, no, she does not participate. She just sits there and waits for it to be over. I have tried and tried to get her to cough and get the stuff out but she is very stubborn. She thinks its "gross"... and 13 year old girls are not very easy to persuade. I was thinking of seeing if the insurance would pay for a respiratory therapist to come to the house and work with the girls on coughing/huffing techniques... I know that is something we need to work on.
I've been having her do treatments every 4 hours during the day (including albuterol)... she does have asthma which kicks in when she gets sick and makes things worse.
I finally heard from the dr and she said Kaitlyn needs IV's but the hospital in San Antonio is completely booked. She said I could go to Fort Worth and have her admitted there (we have seen the CF docs up there several times as well). I am going to see how she is tonight and make final plans tomorrow.
Oh, by the way, I called the school nurse and asked if Kaitlyn does go on IV's if they can do home bound so she doesn't have to go to school. The nurse said she thought that would be a great idea because there is so much going around at school right now that she does not need to be there. She said they've had 5 cases on pneumonia this week and tons of upper respiratory illnesses going around...