cfmommy

DS was diagnosed at birth because of a bowel obstruction due to meconium illeus (sticky green poo). He was in NICU for a month and a half. We began breathing and chest physiotherapy (CPT) immediately. Actually he's so used to it, it seems to calm him and a lot of times he falls asleep. I just spoke to a woman whose granddaughter was diagnosed a couple months ago and is the same age as ds (22 months) and she said it was HORRIBLE starting CPT -- her grandchild screamed and fought the entire time. She's used to it now, but it was a real rough start.

I gradually got used to the idea and began enjoying ds after I started to get a handle on his treatment, medications, etc. I was so afraid the first year that he'd end up back in the hospital, that he wouldn't be able to go to day care 'cuz he'd be sick all the time or that he'd catch the flu.

He doesn't live in a bubble. He goes to a day care center. He gets flu shots each year. As do I and DH. He's on prophalactic antibiotics. We keep him away from other CFers. I hate going to cf clinic 'cuz the local one doesn't seem to understand about cross contamination and germ prevention. When we go to the store, I wipe down the cart with antibacterial wipes and when we get home or to the car after being in the mall, restaurant or playground I wipe off ds's hands immediately, before he can pop them in his mouth.

Sometimes I do feel isolated even though I work full time, as does DH and that's because we have a set routine when we're home with him. He gets CPT 3 times a day -- a.m., dinner time and bedtime. Our doctor has stressed how important it is to keep DS's lungs healthy. So DH has never gone on an overnight trip to his grandparents and when he has to have TOBI nebs, which takes 30 minutes twice a day, I really feel overwhelmed like I don't have time for myself. I get home from work, we do CPT, feed DS, I mix up his medications for the next day, we eat supper, bathe him, rock him to sleep, then at 10 we do one last treatment.