I don't post much, but read the forum quite regularly. We just had our first hospital admission and are currently finishing up home IV's with a picc line. Because of the information I have read on this forum, I think I was much more prepared for this than I otherwise would have been.
It certainly has not been a smooth experience by any means. I think we have experienced more difficulties than usual, but because I had already read on here of some of the problems and solutions we are making it through ok.
BTW, my daughter is doing great. Her lung function had been going down slowly the past 6 months. Her high of 116 FEV1 had gone down to 102 FEV1 in December. A round of orals brought her FEV1 up to 108 right before Christmas (if they didn't go up she would have been admitted then.) She caught a cold right after Christmas and at her follow up appt earlier this month her FEV1 had gone back down. Lower FEV1 in addition to changes in her xrays meant getting her first IV's.
We go back this Thursday for xrays and PFTs to see if she is ready to get the PICC line out.
Just wanted to say thank you for sharing all of your experiences. We are probably not the only family that benefits from hearing from others that are further along the road than we are.
It certainly has not been a smooth experience by any means. I think we have experienced more difficulties than usual, but because I had already read on here of some of the problems and solutions we are making it through ok.
BTW, my daughter is doing great. Her lung function had been going down slowly the past 6 months. Her high of 116 FEV1 had gone down to 102 FEV1 in December. A round of orals brought her FEV1 up to 108 right before Christmas (if they didn't go up she would have been admitted then.) She caught a cold right after Christmas and at her follow up appt earlier this month her FEV1 had gone back down. Lower FEV1 in addition to changes in her xrays meant getting her first IV's.
We go back this Thursday for xrays and PFTs to see if she is ready to get the PICC line out.
Just wanted to say thank you for sharing all of your experiences. We are probably not the only family that benefits from hearing from others that are further along the road than we are.