Tuesday, September 20, 2016

Second time around

We named him Owen before he was born. Young warrior. Middle name of Jacob, after his great grandfather. He carries another middle name: Bauer, his mother's maiden name. German, to maintain his heritage.

There is no doubt that he was born blind. His eyes looked like they were blind. Pediatric glaucoma.

September 14, 2007. Second surgery for Owen, the boy who was born with cloudy eyes. On Tuesday, he had a tube shunt surgically implanted in his eye to regulate the pressure. He was born with glaucoma, and he would be blind if something drastic wasn't done. The surgery went well on Tuesday, but too much fluid drained from his eye, and the doctor needed to go back in and "reform the anterior chamber."

We rose once again in the pre-dawn hours, sneaking around the hotel room to get ready, careful not to wake our sleeping daughter. Our help, my wife's mother, was summoned from across the hall. She would stay in the hotel room to watch our daughter while we went to the hospital with the boy.

Here we go again. We gathered up our diaper bag, the stroller, and my young son with the tube in his swollen eye and headed down the quiet elevator to the deserted streets of Boston. We walked once again to the Mass Eye and Ear Infirmary. Past the Yawkey Pavillion, the parking garage, the bike rack. Hospital on the right. Through the big glass doors. No need to stop at the information desk - we knew to take the elevator up to the 8th floor to pediatric surgery. Slowly, the routine makes its way into your muscle memory, and you just know how to do it.

Floor number 8. Exit the elevator, push the call button and wait to be granted access to the floor. We check in at the desk, and are led once again to a hospital room where we change Owen into the world's smallest hospital gown. The thing is still huge on the boy; he's only 25 days old.

We wait.

The transportation guy arrives and takes my son and his mother down to surgery. Again, I've never made the trip, and I likely never will. Again, Dr. Walton takes the infant from my wife, and assures her that things will be fine and that it is best if she doesn't stay for the anesthesia. Calm, confident, simple. The doctor takes the boy, and my wife returns to the hospital room to look over the Charles River with me.

We head to the nurse's station, pick up a pager so they can contact us if needed (we know the routine), and head down to the cafeteria. Coffee, tea, maybe a snack. We share quiet conversation about everything and nothing.

Back to the room, and then surgery is done. Much less invasive, and things went well. Owen is retrieved by his mother, who nurses him in the surgical recovery area and then brings him back to the room.

His eye has been returned to its normal shape. Tube shunt in place. Discharged by nurses, we remove the world's smallest hospital gown. We are told to follow up with the doctor tomorrow. We walk back to the hotel, past the bike racks, parking garage, and the Yawkey Pavillion. Dinner in the hotel again, and then bedtime.

We visit Dr. Walton on Saturday morning, and things are looking good. Owen's eye is swollen, but it will get back to normal soon. Keep him healthy. Go ahead, check out of the hotel and head for home. See you next week.

Dr. Walton told us the day we met him that caring for Owen's eyes will be a marathon.

We're just getting started, but this is Owen, a young warrior.

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Thursday, September 15, 2016

Come back to Boston

The boy was born blind.

He had cloudy eyes that turned a beautiful dark blue. But they would not see if nothing was done. He was born with pediatric glaucoma. It was no fault of his own. It was nobody's fault. He was just unlucky.


September 13, 2007. The boy had just had his first surgery two days ago. A small tube was placed in his right eye to help control movement of fluid from his eye. We brought him to the follow up appointment the day after surgery and everything looked fine, save for the bruising and swollen eye. I went back home to Albany to work, and my wife stayed in Boston to follow up once more with the doctor the next day before coming home with our duaghter.

The call came in while I was at work. "Come back to Boston."

My family would not be coming home that day. There was a problem. Turns out the tube that was placed was working. But it initially drained too much fluid out of the boy's eye, and the structure collapsed. He required another surgery to reform the anterior chamber of his eye. Essentially, Dr. Walton needed to bolster up his eye a bit. My wife explained that this procedure was a lot less risky - in and out in no time. Still anesthesia and surgery, but not as much fuss and cutting.

Surgery would be tomorrow.

I cancelled my Friday at work and finished up my day. I went home, got things together, and drove to Boston once again. Road food. Gas up on the Mass Pike. Hotel to meet my wife, her parents, and our kids. Dinner and then prepare to take the boy to surgery at Mass Eye and Ear the next day.

We had just done this procedure two days ago, but it had not yet become procedural to us. It would in time, but the hubbub of getting up early and carrying the boy to surgery was still novel to us.

Once again, we went to bed in the junior suite at the hotel, room 1201, and prepared to take the boy with the tube in his eye to surgery the next day.
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Sunday, September 11, 2016

Removing the patch


September 12th, 2007. Yesterday the boy with the dark blue eyes had surgery on his right eye. Pediatric glaucoma. His eye pressure had risen to an unsatisfactory level, and continued pressure in the eye would damage the optic nerve and eventually lead to blindness. The best surgery to manage his pressure was to have a small tube implanted in his eye. The tube would allow fluid out, maintaining a safe eye pressure.

Surgery went well yesterday, and we spent the day in the hotel resting. We awoke today and ate a bit of breakfast in the hotel. Then we walked on over to Dr. Walton's office for his first post-op check up. The boy slept propped up on a pillow, the cloth covered metal eye patch still covering his right eye.

When we arrived at Dr. Walton's office, there were other patients waiting. We sat down and made small talk with some other parents of children with eye problems. Glaucoma? Yes. Surgery was yesterday and went well. He's three weeks old. Born with glaucoma. It's a drag.

Dr. Walton manages his own office. No receptionist, no nurse. It's just him, walking from the exam room to the waiting area, making appointments, chatting with parents and patients. When he exits this time he calls us in and asks us to sit down. As he is walking out of the exam room for a moment to greet another patient, he asks us to remove the patch that the boy has been wearing since surgery. The doctor exits the room for a moment.

My wife slowly peels the tape away from the boy's face and forehead, exposing his right eye.

Red, swollen, bruised.

Holy shit. We look at each other. Is this normal? Holy fuck this looks bad. Should we call Dr. Walton back into the exam room right away? Jesus, this looks bad.

We wait.

When Dr. Walton enters, he is calm and confident. He asks how the boy is doing.

Quick! Look at his eye! Is this normal?

He assures us that his eye is fine. The redness and swelling are totally normal. He checks his eye and assures us everything is fine. Protect his eye, but no need for the metal patch. Everything is fine. We make an appointment to check in again the next day, and then make our way back to the hotel room. If everything is ok, we should be able to head back to Albany tomorrow.

We hang around the rest of the day, eating lunch and relaxing, keeping the boy upright and his eye protected. I need to leave Boston and head back home - work in the morning.  But 3 pm rolls into 4 pm which rolls into dinner time. I leave after dinner, following the GPS map around the Prudential Center about 6 times, lost in Boston. (They put an entire highway underground in Boston! This can make driving with the aid of a GPS difficult. I can see the road on the map, right there! But the road is not in front of me, it's underground.)

I finally get on the highway and head for home. I arrive in Albany, have a bite to eat, and get some rest. Early morning. Work at 7 am.

My wife stays in Boston with the kids and her parents. Another checkup with Dr. Walton on Thursday and then they should be heading home.

The boy is checked by the doctor on Thursday morning. I get the call from my wife telling me they won't be coming home that day.

There's a problem.
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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?
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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.

Ray.

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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Thursday, September 1, 2016

The examination

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 boy with the cloudy eyes is 3 days old, and we have brought him to a doctor in Boston to confirm the diagnosis of pediatric glaucoma and to start on the road to management. We have filled out the paperwork in Dr. Walton's little Boston office, and he has asked us to please come sit in the examination room.

The examination area is a big room with a small office off to the side. A pocket door separates the tiny office from the big exam room. Papers and books are stacked on the desk in the tiny office. Crayon pictures adorn the walls of the room, and a photograph of a large sailboat hangs above 4 chairs along the near wall. Dr. Walton's desk - a table cluttered with handheld instruments of ocular examination, pens, and a box of tissues - sits beyond the chairs. To the right of his desk is a wooden cabinet filled with lenses and switches, and a black swivel chair is situated in front of that. A small sink is attached to the far wall, and a few rolling carts with various instruments are lined up in succession next to the sink.

There are no windows in the exam room, and the fluorescent light gives everything a bright tan look. The doctor asks us to sit down. My wife holds the boy while he asks us questions about his birth, his eyes, and our family. He then explains how the examination will go: my wife will sit in the exam chair and hold the baby during the exam.

Dr. Walton begins checking our son's eyes. He is careful, calculated, and sure in all of his motions and decisions. He visually inspects the boy's eyes. Other instruments are used to gather information. The doctor is a scientist, gathering data and mulling over ideas as he works.

A drop of fluid is applied to each eye, and a device is used to check the boy's eye pressure - a handheld tool with a small tip and a blue light shining from its end. The doctor looks through a lens, and makes some adjustments. He writes. He gets up, gathers something, and returns to the task. Both eyes are checked. The doctor is explaining the ins and outs of glaucoma as he works. He rises and is walking out of the room and says, "His eye pressures are really good. His eyes look good." He leaves the room to get something.

I look at my wife, holding the boy in the exam chair, and I can tell she is thinking what I'm thinking. The pressures are fine.

This has all been a big mistake!

He is fine. Joy! Relief!

When Dr. Walton returns, one of us asks, "So the pressures are fine? He doesn't have glaucoma?"

"Oh no. He has glaucoma. There is typically a honeymoon period shortly after birth where the pressures go down a bit. He has glaucoma."

Crashing back down to reality.

The doctor explains that the boy's eyes are cloudy when his pressures are up as his corneas are stretched and this changes their opacity. His real eye color is dark, dark blue - almost black - since his irises are so thin. This thinning of the iris is typical in children with glaucoma, and it makes these children highly sensitive to light. When eye pressures rise, it damages the insertion of the optic nerve in the back of the eyeball, and this causes blindness.

The exam concludes, and my wife and I sit in the chairs next to the doctor's desk.

The boy has glaucoma, and the newborn presentation is the most severe. He will require surgery and careful monitoring of his eyes and his eye pressure.

"This is not a sprint. It's a marathon," the doctor says. The doctor explains that we will be seen in his office regularly to have pressure checks, and if (when) the pressures rise, the boy will need surgery. The most effective surgery for eyes with newborn glaucoma is a tube shunt placement. Fluid can get into his eyes, but it cannot get out, and a valve with a small tube attached will be surgically placed in his eyes to drain the fluid.

Jesus. You've got to be kidding me. We ask questions. We're nervous. He takes time to answer our questions. Two hours we've been in the office for an appointment that wasn't even on the schedule for that day. Dr. Walton explains it all to us. We make an appointment for the middle of the next week.

We have a plan. We have hope. As we finish up, I asked the doctor, "If we do everything right, will he be able to see?"

"Yes. He'll be able to see."

We have a plan. Monitor the pressures with the doctor in Boston, watch for signs of increased pressure, like cloudiness. Keep the boy healthy. Surgery will be needed, and the boy can't be sick. That's our plan.

We have hope, and we head for home.
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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.
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