When DS was a baby we spent 4 weeks in the NICU at a children's hospital. Great communication with staff, very proactive. There was a binder kept by ds' bedside that we were encouraged to read each day with doctor, nurse, rt & dietician notes as well as lab reports. Rude awakening when we went home and ds spent two weeks at the local hospital. We were kept out of the loop in terms of lab results, we were TOLD what formula ds was going to be switched to -- pregistil, which soooo didn't work for him in the city. Just a totally different vibe.
And CF clinic -- we were very concerned with the potential for cross contamination, the pulmonologist spoke down to me, scold me, try to scare me in one breath and the next breath would lecture us because he thought ds was on too many medication and we shouldn't have to do CPT yet. I'd get physically ill prior to clinic days due to stress. One day after cooling our heels in the tiny waiting room for 45 minutes before being put in an exam room for another hour before seeing anyone -- we walked out, never to return.