Advice needed

[Stone]

My daughter has CF, she is 12yr old 'going on 18'. She has had quite a lot of issues with her health in these last 3 years. She has been in and out of the hospitals. GI is monitoring her closely due to Liver Concerns. She doesn't have diabetes at this time. I am looking for some good tips on how maybe other parents of teens with CF have gotten their kids to take their health seriously and do what they should to stay out of the hospital.
Up until 2012 I was with her full time. I was a stay at home mom, I would even stay with her during each and every hospital stay, which usually last 2 weeks plus. It was tough as she is our 3rd daughter (the only one with CF) and when I was gone the others had to be with family.
I have tried to incorporate charts (that she helped me make) where she can put stickers on the times and days she does her full and complete treatment. (Albuterol, Pulmozyme, 30 min of Vest then her Tobi) which is currently scheduled to be done 2x's a day.
She is doing a little better in these last 2 days, however over these last weeks if she got around to getting 5-7 treatments A WEEK that was good. Maybe there isn't any one good way out there that will work, but just thought to ask.
Thanks,
Maya

 

[jello5675]

Hi Maya, I also have a 12 yr old with CF, although Maddy doesn't have the health issues your daughter does, but I can sympathize with getting treatments done. We just had a clinic a few weeks ago, and I called the nurses before the clinic to ask them if they could talk with Maddy about the importance of treatments, sometimes it helps if they hear it from someone other than mom. They explained that they wanted her to start being more independent getting treatments done, because mom will not always be there. She seemed to respond rather well to the nurses and doctors talking with her. For treatment time, have you tried playing a game with her, my daughter loves bored games, sometimes we play on the game console, but her favorite is Monopoly. Perhaps you could encourage the whole family to get involved in a game when its time for treatments. I'm sure mornings might be difficult, with treatments before school, we don't have time in the mornings to play games, but she will do her treatments and play on the computer or phone, or whatever. I know she's young and you don't want to scare her, but have you talked with her about what the future may hold for her if she doesn't do her treatments? As you stated she has been in and out of the hospital the past few years, I'm sure she doesn't enjoy that, perhaps you could bring that up in the conversation. I always get nervous talking with Maddy about the future because she is so young but it is important to help her understand that we as parents just want them to live a long and healthy life. I hope some of these suggestions help and if I can come up with any more I'll let you know. Take care and try not to stress.
Sincerely,
Tonya