Yes, you are right. I shouldn't have written from just the mom's perspective. Of course, it is so much harder on my daughter. She is thrilled to be going to school and out of the hospital. She does seem to get good sleep though, thankfully in or out of the hospital. The feeding tube is what wakes her up having to use the restroom at night.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, two months no cf