My step-son has lived with us for two years, he is almost 14 and has CF. His mother recently got back on her feet and wanted her to come back and live with her, its pretty complicated but he left. He is several states away now, since mid Sept and I am so worried about him. His pharmacy has contacted me several times telling me his meds have not been re-ordered, his mom won't give us his new address and she won't answer her phone, not even for the pharmacy! He was recently hospitalized in April due to a rare bacteria, a non tuburculosis bacteria, he was on home IV for 3 months and finally got a clean culture, except for the psuedomonia that he has had for a long time. I am so worried what will happen with him stopping this amikacin (nebulized), maybe I just need to learn when to let go, I don't know. I have a two year old that has CF as well, he also has CP, some of you may remember me, but it's been a while. Guess I'm looking for someone to say that since he didn't culture it it prob won't come back, is that safe to say? I've just been so obsessed with his health care, making sure he always got what he needed when it was needed, knowing how serious CF can be scares me, I'm worried if he goes untreated he could get this bacteria back, or I don't know what. He's not getting his hypertonic saline or his albuteral either.
I do not get along with his mom, so maybe she is just trying to punish me, I just feel so angry and helpless.
I do not get along with his mom, so maybe she is just trying to punish me, I just feel so angry and helpless.