So in my family we have hada shocking turn of events. My daughter 12 is still in Cf diagnostic limbo. She is treated for CF. In an attempt to get our insurance to pay for an Ambry genetic test for my daughter I asked my doctor to put in for the Ambry test for me. My thought was my daughter's test went to a different lab, her sister's went to Ambry and with my test I could get the insurance to pay for Ambry testing. It did not turn out that way instead I found out I have the one gene I knew she had and I also have the 5T variant I gave her sister. Well, it explains all of my symptoms. Two days later I saw the adult CF team and now I need advice.
So how do you all do this. My daughter does her nebs and vest twice daily. I start my nebs today and we leave for vacation tomorrow. I start mucus clearance after vacation when I meet with the CF respiratory PT.
1. How to do you schedule? Do you do your treatments together or is coughing on each other a problem? Do you set up all the medical stuff in one room and keep it all apart?
2. Do you sterilize your nebs separately? For my daughter I wash with soapy water, rinse, and then sterilize in the baby bottle sterilizer. Can we each use a different type of Pari neb and sterilize together or would we pass germs? Can we use the same sterilizer separately?
Thank you for any support.
Jen
So how do you all do this. My daughter does her nebs and vest twice daily. I start my nebs today and we leave for vacation tomorrow. I start mucus clearance after vacation when I meet with the CF respiratory PT.
1. How to do you schedule? Do you do your treatments together or is coughing on each other a problem? Do you set up all the medical stuff in one room and keep it all apart?
2. Do you sterilize your nebs separately? For my daughter I wash with soapy water, rinse, and then sterilize in the baby bottle sterilizer. Can we each use a different type of Pari neb and sterilize together or would we pass germs? Can we use the same sterilizer separately?
Thank you for any support.
Jen