For us we were dealing with a surprise diagnosis -- normal birth, no family history and suddenly lifeflight to the city 250 miles away for emergency surgery on our newborn because of a bowel obstruction. Then a 4 week NICU stay. DH and I are fairly healthy, so neither of us had ever had to really deal with a major hospital stay, major illness, deal with doctors and medical people on a regular basis.
The worst was disagreeing over medical care. When DS was 2 months old, he had a horrible cough. Would cough so hard, I'd have to hold him over the kitchen sink, floor drain... 'cuz he'd vomit up his formula. We took him to the local CF doctor for a well child exam, shots and he started coughing and I said to the doctor -- I'm concerned about his cough. He shrugged and said, he has CF, it's what they do. DH and I argued and argued about it. He thought I WANTED DS to be sick -- told me I should see a shrink and get put on some antidepressants. Was downright nasty. A few weeks later, we had a recheck at the CF clinic in the City and the doctor YELLED at us. DS had bronchitis. Didn't we KNOW he could've ended up back in the hospital. I felt vindicated and wanted to say "I told you so".
Basically we needed to learn to become more proactive with DS's care. Question things when they don't seem right. And if we have concerns, not to be so worried about overreacting, being a bother...
