Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Hey all!After replying in re: to new post (i think Brynn9779) I realized that there is alot of things this hospital in Fl doesnt share with me like Michigan children hosp. did.I feel like the cf nurse coordinator is much too busy to discuss stuff with me, i mean she tries, but i feel really pressured, i can TOTALLY tell she is, and so then i hate to take her time asking much.Its more like, " hey hows he doing, really?heres the game plan " sorta thing.I want to look at my sons file, I dont know why, but i do, and now i'm on a mission.Isn't that my right as the parent?I want to see what they say about his mutation, what ever happened to sputum cultures I never heard anything about, tests they've done i never heard results to, like i feel i have no control over what theyre doing with him, and i hate that.Basically i feel like when Tyler was last admitted dec 4 this yr they mentioned to me he had cultured PA and fungus.Like, could somebody call and let me know this crap?Its important.Who knows how long they let it sit in his lungs before they did anything about it.No wonder he had crackles in his lungs and was unresponsive to Tobi inhaled, he probably had these 2 darned things for months w/o them telling me.Bev said this cf nurse is EXTREMELY busy cuz she's the only one and they have satellite something or others, i think other offices, i feel bad for her, but not bad enuff to risk my sons health cuz of it. Sorry guys, I guess i woke up with ALOT to say today, lol! :) Plz let me know what you think. Patty, mom to Ty;er8wcf and 2wocf in Florida, can you believe its still hot heere, when will it ever end? Quote Link to comment Share on other sites More sharing options...
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