Monday, September 5, 2016

The glaucoma routine

Here is the story so far:
August 22, 2007: Something about his eyes
August 23, 2007: Whispers and gut feelings
August 23, 2007: Homecoming
August 24, 2007: Boston
August 24, 2007: The examination

August 24, 2007 to September 8, 2007. We return home to Albany from the eye doctor in Boston with a renewed sense of hope. We have a plan. The boy with the dark blue eyes got a bad break, and he has pediatric glaucoma. If left unchecked, he will not see.

We shake our heads in disbelief when we think back about the movie we watched the night before he was born.


What are the chances that we watch the story of Ray Charles - the musician who was blinded by childhood glaucoma - the day before our son was born with glaucoma? Life is funny like that. It jabs at you and claws at you, and sometimes it gently kisses you on the forehead. And sometimes, life punches you in the gut.

We settle into the routine in our yellow house in Albany. We have a newborn son, with newborn needs. Our 2 year-old loves her little brother. Things start to feel good.

We travel to Boston on the last Wednesday in August. I take the day off work, and we pack our family of 4 into the car and head to Dr. Walton's office. We drop Cody, our German Sheppard dog, off in Coxsackie at the in-laws' house. We'll pick him up when we come back home that night. The boy's eyes are checked, and we make an appointment to see the doctor within a week. We take the kids to the aquarium, and buy a family membership there. We'll likely be back again soon.

On the last day of August, my wife calls her mother. "Can the dog stay with you, temporarily? We can't keep running the dog to Coxsackie when we go to Boston for pressure checks. It's too much. It'll just be temporary, until we get settled with the baby, the trips to Boston, and the glaucoma." My in-laws agree to care for Cody. No hesitation, no questions.

(Cody never lived with us again. My wife's parents loved him, and we knew it. We never asked for him back. He lived happily with my in-laws until he passed in 2013.)

Life goes on, and we start to get comfortable with the fact that our son will need surgery to save his vision. There are trips to the doctor in Boston. We work diligently to keep him healthy. Limited exposure to other kids and babies. Poor big sister - limited play dates. Our friends understand.

We learn some good tricks from Dr. Walton on how to have a successful eye examination for the baby. Hold the baby a certain way in your lap so the doctor can get in tight and check the eye pressure. Crying may increase eye pressure, so a calm baby is best. We would bring a small container of sugar and put a little water in it in the exam room. Then, my wife would dip a pacifier in it and put it in the baby's mouth during the exam. Most of the time it kept him pretty quiet. In fact, he has always been pretty easy going during his eye exams, with only an occasional fuss while getting poked and prodded in the eyes.

We get in the routine of work, baby stuff, and Boston.

The boy with the dark blue eyes is 18 days old. Another trip to Boston. Eye pressure check. It's a Saturday in early September, and the doctor informs us that the pressure in the boy's right eye is rising. Surgery is needed. It will be scheduled for the upcoming Tuesday.

We make arrangements. Hotel reservations will be needed. We'll see the doctor for a pre-op check on Monday, and on Tuesday morning we'll report to the hospital for surgery. A tiny tube with a valve in it will be placed in the boy's right eye to drain the fluid and keep his eye pressure under control. This will keep pressure off his optic nerve and preserve his vision. Hopefully.

This is it. Surgery for the boy.

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