The story so far:
August 22, 2007: Something about his eyes
August 23, 2007: Whispers and gut feelings
August 23, 2007. I was home with our daughter getting ready to come to St. Peter's Hospital to take my wife and son home for good. At the hospital, the pediatrician came in to discharge the boy. My wife made a request, but she was insistent enough for it to be an order, "Can you take a really good look at his eyes? A really, really good look?"
The pediatrician left the room with our son to have the benefit of the better lighting in the nursery. She came back and reported that indeed his eyes were cloudy. My wife called me at home with the news: the doctor thinks our son has either cataracts or glaucoma, and she was going to make a few calls and get back to us soon.
I got to the hospital, and we packed up our belongings and got ready to leave St. Pete's with our son and his big sister.
Then the phone rang in the hospital room. It was the pediatrician instructing us to head over to the pediatric ophthalmologist's office right away. Don't go home with your new baby, but go right to the eye doctor's office. They were waiting for us.
Things were getting serious.
We arrived at the pediatric ophthalmologist's office and filled out the obligatory paperwork. We waited, our tiny family of four, playing with the toys and nervously reading the books to our 2 year-old daughter and our 2 day-old son with blue, cloudy eyes. Something was up with the boy's eyes, and we knew it was not good. We were anxious as we were called into a room, and we gave our son's short history to the assistant. Normal pregnancy. Normal birth. Cloudy looking eyes. Here we are.
An examination was done by the assistant, and then the doctor made his entrance. Another round of history taking, and another examination. We were told that our son may have glaucoma. Drops were administered to the boy's eyes so his intraoccular pressure could be checked. We were given a book about childhood eye diseases and instructed to read the chapter about pediatric glaucoma while we waited in the waiting room. (Funny, the chapter had been written by the very doctor who was examinating our son.)
While in the waiting area we read about our son's possible condition. There was one sentence in particular that brought us to tears. Something about the newborn presentation of glaucoma being particularly severe, and children who present with glaucoma at birth will be blind. Blind.
Now, I'm no genius. But who the fuck in their right mind tells parents that their child will be blind by having them read a chapter in a book? In a waiting room? With other people around? You want to see a couple thirty-somethings cry? Tell them their 2 day-old son will be blind in the doctor's office waiting room. There must be a course in medical school that this guy missed. Something like, "How to tell parents shitty things about their child's medical condition" or "How not to be an asshole."
Anyway, we were brought back into the exam room, and our son had his eye pressure checked. Another doctor was brought in, and discussions were had. Consultations were made. Waiting and anxiety and attempts at holding ourselves together continued.
We had a diagnosis: pediatric glaucoma. Our son's condition was severe enough (and rare enough) to warrant a trip to Boston to see a specialist to manage this condition. We were referred to Dr. David Walton, and sent home with our children and a phone number to call to begin our journey.
(The doctor who had us sit in the waiting room made at least one right move that day. He sent us to Dr. Walton.)