Showing posts with label Glaucoma. Show all posts
Showing posts with label Glaucoma. Show all posts

Tuesday, September 6, 2016

Surgery for the boy

The story so far, in case you've missed it.

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

September 11, 2007. It is Tuesday, and the boy born with cloudy eyes that turned deep, dark blue is having his first surgery today. He has pediatric glaucoma, a condition that is the leading cause of blindness in children, and he is scheduled to have a tiny tube shunt surgically implanted in his right eye to regulate the ocular pressure. He is 21 days old.

Eye surgery in Boston goes like this for our family: Monday morning, my wife packs up the car with the boy and his big sister, and her parents ride along as well. They have taken the week off of work to help out. I stay in Albany to work, and I will join the crew Monday evening.

They drive to Boston and have a visit with Dr. Walton to have the boy's eyes checked one last time and to go through some pre-operative assessments. Again, a visit with Dr. Walton is pretty special: no nurse, no mid-level practitioner. You walk in the office and Dr. Walton greets you. You wait in the small waiting room with the New England-themed books and the crayons on the child-sized table, and then he calls you and your child into the exam room.

After the visit with Dr. Walton, my wife and her folks check into the hotel near the hospital. We get two rooms - junior suite on the 12th floor so we have some space and the room across the hall. Medical discount. The kids settle in and have some dinner. I leave work in Albany at 7 pm, pick up some road food, and drive to Boston, hoping to arrive by 10 pm.

We awake early in the morning on Tuesday, September 11th and get the boy ready to head to the hospital. My wife's mom is called over from her hotel room so she can keep an eye on our 2 year-old. We leave the hotel at 5:45 am and walk the empty streets of Boston to the Massachusetts Eye and Ear Infirmary. The walk is slow but refreshing; the air is cool and the sky grey. Yawkey Pavilion. Mass Gen. Parking garage. Bike rack. Hospital on the right.

When we arrive at the Mass Eye and Ear Infirmary, we take the elevator to the 8th floor - pediatric surgery. The safety doors are locked, and we ring the bell and are let in. We check the boy in at the desk and are shown to a room. We are told to change the boy into the world's tiniest hospital gown and wait until medical transport comes to walk one of us to surgery. (It was always my wife walking and carrying the boy to surgery, by choice.) The nurses show us to the family area where we can store something in the fridge if needed. We are offered juice. No nursing for the boy.

That surgery day has been repeated 8 times in the boy's life, so far.

Finally, the medical transport guy arrives to take my wife, holding the baby, to the elevator and to the surgical area. The transport guy is super cool. Funny enough to put you a bit at ease, but wise enough to know the serious nature of pediatric surgery.

Since my wife has always taken down the boy to the surgical area, I have no idea how it goes there. It's tough for both of us. Tears, prayers, petting the boy's tiny head and rubbing his feet and legs. She carries him off, and I wait, looking out the window over the Charles River.

My wife has told me about bringing the boy to surgery. Dr. Walton is there, and he takes the boy. No need for mom to be there to watch her son being put under general anesthesia. No need for that added stress. My wife returns to the room to wait to be called down again for the post-operative retrieval. 

During surgery, my wife and I sit and wait. We look out the window and talk about those things that husbands and wives talk about in hushed tones in a sterile hospital room. We walk down to the cafeteria and have some tea and coffee and a bit to eat. The nurse on the pediatric surgery floor gives us a pager. She'll ring if the operating room calls, and we can return to get our son. We return to the room.

We wait.

We meet other parents who have children that require eye or ear surgery. We once met a couple whose daughter was born with one eye. No reason why. Mother Nature or God or bad luck simply tapped this one on the shoulder and gave her only one eye. How do you deal with that?

The wait is deadly. Is everything ok? Anesthesia for a 3 week-old child can be tough. What's taking so long? We sit. We talk. We read the paper. We look at the river and the cars on Storrow Drive. Cambridge is nice. We call my in-laws. The daughter is doing well. She ate breakfast and went for a walk.

Finally, the nurse calls the room and tells us surgery is done. My wife reports to the nurse's station. She is escorted back to surgery, and the boy is in recovery. Surgery went well - no problems. Keep him mostly upright for 24 hours, and see you tomorrow in the office. Nurse a bit, and hold him a bit. Back up to the room you go.

When my wife returns, she is holding the boy. He's got a cloth-covered metal eye patch taped over his right eye. A small dot of a bandage on his foot indicates that the IV entered there. He's groggy, probably. It hard to tell what's what when the boy is only 21 days old. The nurse wants him to chill a bit before he goes back to the hotel.

He does as he should. Diaper change. We take off the tiniest hospital gown in the world and leave it on the bed. We call the nurse, and she discharges the boy from the hospital. Tube shunt and eye patch and tiny foot bandage and all. We thank the nurses, and exit the locked doors to the bustling streets of Boston below. Yawkey Pavilion, the bike rack, and the garage. Back to the hotel for some rest and some food. My wife and her parents, my daughter, and the baby boy with the metal eye patch taped to the front of his face eat in the hotel restaurant.

The boy sleeps propped up on a pillow in the bed that night. Tomorrow morning we report back to Dr. Walton's office for a post-op check. If all is ok, we'll follow up on Thursday. I'll head home on Wednesday evening to work on Thursday and Friday. Perhaps my family will be back in Albany on Thursday evening, maybe Friday morning. If all is ok.

All will be ok, right?

Thursday, September 1, 2016

Boston

In case you missed 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: It's 5:30 am on Friday. It's still dark, but the first rays of sun are trying to peek out over the houses in our little neighborhood. I'm sitting on the floor in the living room with my back leaning against the couch, holding the boy with the big, beautiful, cloudy eyes. I'm crying, but feeling hopeful that our son, who was just diagnosed with pediatric glaucoma, will meet the doctor today who will help him see. It all feels like a big mistake.

My wife is making her tea, and we are preparing to leave for Boston in a couple hours. Plans have been made. My wife's parents have taken the day off work to stay in Albany with our 2 year-old daughter, and we would take the 3 day-old boy with the cloudy eyes to Boston.

The sun comes up, the in-laws arrive, my daughter is fed, and we fasten the boy into his car seat. I drive, and my wife, who is still moving a bit gingerly from the birth 3 days earlier, rides next to me. As we drive, my wife makes a few calls to our insurance company and the boy's pediatrician. We need letters of medical necessity. Of course.

After one call to the pediatrician, she flips her phone closed. "What'd he say?" I ask.

She replies, shaking her head, "Glaucoma. What a drag." What a drag. We chuckle a bit at this statement. The pediatrician is a great guy, and an awesome doctor. He takes incredible care of our children. But at that time, at that moment in his professional career, he must have been at a loss for words. What a drag. To this day, my wife and I sometimes mutter, "Glaucoma. What a drag." It's true. The boy got a shit deal so far in his young life. It's a drag.

We drive and stop to nurse, and we stop to change diapers, and we drive. We arrive in Boston, and we find the building where Dr. Walton practices pediatric ophthalmology. It's a high rise apartment complex with professional offices in the lobby and mezzanine. We ask the guy at the front desk in the lobby where we're going. He directs us to the second floor. Suite 201. We walk down the hall to a basic tan door with a name placard next to it. "Dr. David Walton." We turn the handle.

It's locked.

The doctor who is to save our son's sight is not there. We wait. We return to the lobby and ask the man what is going on. He makes a few calls. We sit in the lobby. The boy nurses. We change his diaper. We do what normal young parents do.

We wait.

Finally, after an hour or so we are told the doctor has arrived. We head back up to suite 201 and walk in. Dr. Walton is the only one there. He is a tall man, early 70's. Nothing flashy. Simple solid shirt, tie, dark pants. Belt matches the shoes. Slightly unkempt, but he is not the doctor who worries about his appearance. In time we learn he worries about his patients.

He asks what we are doing there, a confused look on his face. There's been a mistake. It's all a big mistake. When the appointment was made, my wife thought it was for Friday, and Dr. Walton thought it was for Saturday. Someone made a mistake, but it doesn't matter who. We learn that Dr. Walton performs surgery on Friday mornings, and that's where he was. He was not expecting us, but he invites us in and we fill out the paperwork that goes with any medical visit.

The office is small. A 10-foot hallway leads to a reception area on the right and then opens up to a waiting area with a few doctor's office-type chairs in it. There is a shelf with toys. Books with New England themes sit on the table. Blueberries for Sal and Make Way for Ducklings. Mike Mulligan and His Steam Shovel. The walls are adorned with snapshots of children who have glasses, patches, and smiles. Papers with crayon drawings are taped next to the photos. These children are Dr. Walton's patients. Dr. Walton's children. We sit and write while the doctor is at the reception desk managing things that doctors manage.

The office is atypical of a medical office. Usually there are receptionists and medical technicians and mid level providers buzzing around. Not here. No receptionist. The phone rings, and the doctor answers it. Nothing flashy. No extra personnel. Just the doctor and us. We finish the paperwork and Dr. Walton invites us to join him in a room just off the waiting area.

The doctor will see you now.

Monday, August 29, 2016

Homecoming

August 22, 2007: Something about his eyes
August 23, 2007: Whispers and gut feelings

August 23, 2007- When you bring your baby home from the hospital for the first time, it's supposed to be a joyous occasion. The slow, careful drive from the hospital. Walking up the driveway, unlocking the door, and crossing the threshold into the home. Your home. This is it, son. This is where we live.

We were discharged from St. Peter's Hospital with the boy with cloudy eyes and were sent to the pediatric ophthalmologist's office where he was diagnosed with pediatric glaucoma. Glaucoma in children is a rare condition, affecting about 1 in 10,000 kids. The disease causes high eye pressure, and this pressure damages the optic nerve, leading to blindness if left untreated. The newborn presentation is the most severe. If your kid has glaucoma at birth, he will likely be blind, we were told. Tough luck.

The drive home from the eye doctor's office was a bit surreal. I'm driving, my wife shotgun, and my 2 year-old daughter and 2 day-old son with cloudy eyes riding snug in their seats in the back. We were just told that the boy would likely be blind, and our only hope was to head to Boston to see a glaucoma specialist to attempt to correct the problem.

No joyous homecoming, no fanfare. Just tears. I remember thinking that it wasn't supposed to be like this.

We enter the house, sit down, and take a moment to enjoy the presence of our son and daughter together in our home. My wife immediately got on the phone and called the doctor in Boston. The doctor himself answered the phone (weird, huh?), and an appointment was set up for noon the next day. Calls were made to family members telling them the news. I called a friend whose father was an ophthalmologist in town, and he got back to me. If the doctor here says to go to Boston, you go to Boston. You're in good hands.

We were going to Boston. Homecoming.

Sunday, August 21, 2016

Something about his eyes

August 22, 2007. It was my 9th wedding anniversary. But we didn't celebrate it. Our son had just been born the night before, and we were celebrating his new life.

I awoke early that day, unable to sleep from all the excitement the night before. (We strolled into St. Peter's Hospital a little after 10 pm, and the boy was born just before 11. He came out like vaginal cannon ball.)

That first night of his life was a blur. Doctors and nurses and holding him and looking at him. Touching his miniature feet and hands. Looking at his eyes.

Something about the eyes.

They remained closed much of the time that first night. There may have been a moment or two when the eyes blinked, but only a quick moment. There was something about the eyes. My wife knew it. I knew it. We just didn't know what it was about his eyes. Just...something.

So on my 9th anniversary, I got up and fed my 2 year-old daughter. I got her dressed, and brought her to meet her new little brother. The hospital scene was typical; bassinet beside the bed, and my son being held by his exhausted but beautiful mother. And the boy and his big sister met for the first time.

Still, there was something about the eyes.

Our room at St. Pete's looked over a courtyard. Not the best vista, but we weren't too interested in the view. While we were hanging out and laughing and holding and loving our children, I took a moment and brought my son over to the window, just to show him the sky, the bricks, the clouds, and the world.

Finally he opened his eyes, and I could see them very clearly. He kept them open, looking right up into the unbelievable blue sky. His eyes were cloudy. Grey. Mirrors of the clouds that gently hung in the blue August sky above. Slightly moving around, as if he was searching for something that wasn't there. His eyes were cloudy.

These eyes were blind.