Monday, October 24, 2016

Why Boston?

Some people ask us if travelling to Boston regularly for Owen's eye pressure checks is hard. It must be a pain to load everything up, get in the van, drive 174 miles to Boston for a doctor's appointment. Right?


Driving to Boston for an appointment with Dr. Walton has never been, or never will be, difficult or a burden. It's our thing.

Autumn 2007. Owen is a couple months old. He has had two surgeries on his right eye, both when he was 3 weeks old. He was born with pediatric glaucoma, and regular doctor visits and eye pressure checks are necessary to preserve his vision. Pressure goes up, surgery is done.

But why Boston? Why Dr. Walton? Can't anyone in Albany do the pressure checks?

One time in October or early November of 2007, we started to notice a little more cloudiness in Owen's eye, a sign that eye pressure may be rising. We called Dr. Walton. What do we do? For our conviencence we decide to make an appointment with the eye doctor here in town who initially diagnosed Owen with pediatric glaucoma.

He's a nice doctor, and I'm sure he does what needs to be done to help children with eye problems. We arrive at his office, and check in. We wait a bit in the same waiting room where we were told that Owen would be blind, and then we are brought to an exam room. A nurse comes in with some papers and asks us some questions.

Yes. Pediatric glaucoma. We see Dr. Walton in Boston. Owen had an Ahmed valve implant on September 11th, and a reformation of the anterior chamber on September 14th.

She takes notes.

We just noticed that his eye looks a bit cloudy and we were concerned. Right. We typically see Dr. Walton, but we figured we would be seen here in Albany for convinence.

Nurse leaves, and we wait.

Enter medical student. He takes notes.

Yes. Pediatric glaucoma. We see Dr. Walton in Boston. Owen had an Ahmed valve implant on September 11th, and a reformation of the anterior chamber on September 14th. We just noticed that his eye looks a bit cloudy and we were concerned. Right. We typically see Dr. Walton, but we figured we would be seen here in Albany for convinence.

He's a nice guy, and will probably make a good doctor some day. Just not today. He performs a cursory examination.

The doctor enters. We tell him our story. He exams Owen's eye again. The glaucoma doctor from an office upstairs enters and checks our son too. Pressure check finally occurs. Things are ok. Keep an eye on things, and follow up with Dr. Walton.

It took several different levels of medical professionals to get the information we needed. Several different people, all recording our same story.

We vow never to have another doctor examine our son again, unless under the guidence of Dr. Walton.

An office visit with Dr. Walton is something special. You enter the office to the tiny waiting room, greeted by the crayons on the small table, the pile of New England-themed books, and the countless photos on the walls. Sometimes Dr. Walton is at the desk waiting. Sometimes he is in the exam area, and you simply know to sit and wait. We often wait with other families who are going through the same thing that we are. Glaucoma, cataracts, blindness. Children who are wearing patches and glasses and doing kid things.

There's something different about this office. No multi-level practitioners running around. No receptionist. Just you, some other families, and Dr. Walton. And during the examiniation, you know that you are watching a master at work. He moves swiftly and with confidence. He sometimes stammers when he talks, but you know right away that he knows what the deal is. He speaks as if you are family, and he cares for his patients as if he was caring for his own children.

During one office visit, when Dr. Walton first met our 2 year-old Josie, he took some time to check her eyes, just to be sure. When Leah, our baby, came along when Owen was 3, he checked her eyes too. He just cares for kids and their families.

So, we have our doctor in Boston, we have our routine, and we have our little family with the son who was born with cloudy eyes. Preserving his vision takes some effort, but it never is a burden. The marathon continues.

Saturday, October 22, 2016

Farmers market and the stinky van seat

October, 2007. We travel to Boston weekly, visiting with Dr. Walton for pressure checks for Owen. Owen was born with glaucoma, and his eye pressure must be monitored regularly; if pressure rises, this may damage his optic nerve and cause blindness. So far, Owen has had 2 surgeries on his right eye. He is 6 weeks old.

Driving to Boston becomes routine. We pack up the minivan, put Owen and Josie in their car seats, drive the Mass Pike for 174 miles, and have an appointment with Dr. Walton. If Owen's eye pressure is up, he is scheduled for surgery the next week. We keep a hotel reservation for several weeks in advance, just in case.

After each appointment we would typically go to the aquarium or walk along Charles Street to the park to goof off around the duck statues from Make Way for Ducklings. All the while, we wait until Owen needs another surgery. We hope he doesn't, but we know he will.

We have a new minivan, purchased just prior to Owen's birth. What luck - we got the one with an in-dash GPS system and a DVD player. We're not big TV and video people, but having the ability to play a Laurie Berkner DVD while driving 6 hours in a day is helpful.

I'll preface the next few paragraphs with this: I'm not the smartest guy. I've got a decent head on my shoulders, and I can get by. But sometimes, I'm completely lost.

So, we are driving to Boston one morning. It's beautiful - Autumn, with leaves changing, crisp air and  the same deep blue that covered the skies the day I first saw Owen's eyes. Blue.

We pull into a rest area on the Mass Pike to nurse and check diapers. At this particular area, there is a farmers market. Great! I take Josie out to walk along the few tents, looking at apples and pumpkins and making small talk. Alecia stays in the car to nurse Owen.

Josie and I walk and talk, and we slowly make our way back to the car. I put her in the car seat and strap her in safely with her head rest and her little legs poking out in front of her. I tighten her straps and belts.

I smell something.

I look around. I'm standing outside of the van with my head poked in where Josie is sitting.

Something smells like shit. Literally.

Now, when you're a father of 2 little ones, it's not uncommon to smell bad things. There's poop, pee, farts, and general smelliness. But this smelled like shit, and I can't identify the source.

I lean my head in the van and smell the back of the driver's chair where the handle and pocket are.

Ew. This smells bad.

"Sweets," I say to my wife. "The back of this seat smells like crap."


I repeat, "The back of the van seat smells like crap."

She looks at me like I'm an idiot, because she knows me. She comes back to investigate. We're both standing outside the van door with our heads poked in. Josie is strapped into her car seat with her little legs kicked out in front towards the back of the driver's seat where, I believe, the crappy smell is eminating from.

"See. It smells like crap. This van seat smells like crap. Smell it."

My wife leans in and smells the back of the van seat. She then turns her head slightly and smells - and visually checks - Josie's little shoes that are on her feet at the end of her pokey little legs.

"Ok, Sears," she says. She shakes her head at me, or possibly at herself for marrying such a dolt. "It's not the van seat. It's your daughter's shoes. She stepped in dog crap."

While walking through the outdoor farmers market, we must have ventured into ground zero of dog crap, and Josie stepped in some poop, carrying with her the stinky remains of a dog's breakfast, smell and all. I just didn't realize it. I could smell something, so it naturally makes sense that the back of the van seat should smell like crap. It never occured to me that the odor could be coming from Josie's shoes.

Like I said. I am not the smartest guy. And that's how things go for us. Sure, we're running like mad to help save our son's vision. But there are moments of fun, and there are things that happen - tiny events that all families have hidden in their history - that make it all feel normal.

Friday, October 7, 2016

Falling into routines

Alecia is my wife. She keeps it all together and makes it all work. Nothing is ever a big problem for her. She knows that things have to be done, and she does them. She's always been like this.

Autumn, 2007. This is how our weeks go managing Owen's glaucoma:

Owen is a month old. He has pediatric glaucoma, an unfortunate diagnosis for a child who doesn't deserve the lot he has drawn. Owen has just had two surgeries on his right eye. First, a tube shunt was placed in his eye on September 11th, 2007 to help keep the pressure under control. The surgery was a success, but too much fluid initially drained out, so he had to have a second surgery on September 14th called a reformation of the anterior chamber. Essentially the eye had to be reshaped and the fluid inside the globe had to be brought back into balance. Pediatric glaucoma creates high pressure in the eyes, and this robs children of their vision by damaging the optic nerve. Controlling the pressure is the key to preserving vision.

After Owen's second procedure we fall into a groove. We have weekly visits with Dr. Walton in Boston. We pack into the car and drive about 3 hours to see him every Saturday. The trip takes a bit longer than normal because we have to stop and nurse, change diapers, and generally keep the children happy. Owen has his pressures checked. If the pressure goes up, we get scheduled for surgery, which would occur on the following Tuesday.

Alecia has a hotel room booked every week for 4 weeks in advance. Every week. The reservations need to be made and managed separately. If we need surgery, the hotel would be reserved for the week and we'd be ready to go. When Owen gets checked on a Saturday and we are told his pressure is fine, we drive home (after a trip to the New England Aquarium) and Alecia cancels the next week's hotel reservation. She then tacks on another room reservation on the end of our long chain of reserved hotel rooms.

Every trip to Boston is filled with some anxiety. Is this the week that the pressure will be up and we'll need to spend the week in Boston for surgery? Is Owen seeing things? Are his eyes ok?

We frequently look into Owen's eyes to see if they are cloudy or enlarged, signs that his pressures are rising. Remember looking into your baby's eye, just to connect? We do it to connect and to monitor his eyes.

We live like this for months. This is our normal.

Alecia manages it all. She has a notebook and jots down things about hotel reservations and such. She makes sure everything is on track. She makes sure we are prepared and ready to take care of our son.

And it is never a problem. Ever.

It is never a hassle to pack up the car, drive 3 hours for a half-hour appointment and troll around Boston, only to drive home that evening, arriving after dinner and putting the kids to bed. It has never been, and never will be, a hassle or inconvenience.

The children fall into the routine. Owen is awesome. He is held by Alecia for his eye pressure checks, crying occasionally, but never too bad. Alecia has a small container of sugar that she fills with water and dips a pacifier in during the exam. She then places the sweet treat in Owen's mouth to keep him calm during the pressure readings. It becomes normal for him. To this day, Owen sits in Alecia's lap for his pressure checks, and does exactly what he is supposed to do to allow Dr. Walton to get a good reading of his pressure.

One problem Owen has when we travel home from Boston: his little body knows when we are 16 miles away from home. Every trip to Boston, the little baby in the back would start fussing as we are traveling on I-90, and about 16 miles from home, he'll start crying. We could almost gauge our progress in the trip by it. Almost home, and here comes the fuss.

Shh. C'mon buddy. We're almost there. Shh.

Should we stop to nurse? Change a diaper? Relax? We're almost home. Sometimes we push through with the crying baby, other times we stop until Owen settles down. Josie, Owen's big sister, is 2 years-old, and she too, never complains about the car rides, the time away from home, or the responsibility of caring for her little brother's eyes.

That's the routine, and it works.

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.

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.

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.

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?

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.

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.


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


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.

Thursday, August 25, 2016

Holding it together in the waiting room

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.)

Wednesday, August 24, 2016

Whispers and gut feelings

August 23, 2007. Our son was born the day before, and we were starting to realize that his eyes were different. They were cloudy. They just didn't look right.

I can't remember who brought it up first. It must have happened in one of those small, whispered conversations that occur between a married couple. "What do you think of his eyes? Have you noticed his eyes?"

"Yes, they look different."

Something was different about the boy's eyes. He was perfect in every way - 9 pounds, 10 ounces, big head, and light colored hair. But he kept his eyes closed, and when they finally did open, they were cloudy. They saw nothing.

We were in St. Peter's Hospital on the maternity floor. One of the nurses came in to check on us while we were hanging in the hospital room. We asked her to take a look at the boy's eyes and check if anything looked funny. She held my son, looked at his eyes, and reported that the grey, cloudy blobs were simply his eye color. Nothing to worry about.

Case closed, right? Nope.

You know when you have a gut feeling? Something that just tears at you and grabs you and won't let go? This was one of those feelings. My wife and I were not satisfied with the nurse's assessment of my son's eyes.

We couldn't let it go.

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.

Tuesday, January 26, 2016

They Must Think We Are Crazy. Or Idiots.

Thinking about the upcoming vote for a refurbished Albany High School, I've encountered many people who will vote "Yes" and many who will vote "No." The naysayers say that the city's residents are overtaxed as it is, and throwing money at a problem (AHS graduation rate currently stands at about 59%) won't solve it.

I say the building is falling down, and we, as a city, have a moral and civic obligation to our young citizens to provide them with a safe and functional school building in which they can attend class.

A recent article in the Albany Times Union stated that the recent fighting and secrecy of the school board, combined with super high taxes, will likely make many families flee for the safe confines of the suburbs.

We choose to stay and fight for Albany High School and its students. We choose to support this incredible school and the many opportunities that it will give - and has given - to our children and the students that attend AHS. The naysayers think we'll flee for the 'burbs.

They must think we're crazy. Or idiots.

Why would we stay in a district that graduates only 50% of its students in 4 years? Why would we stick around, with a school board that operates in secrecy (as evidenced by the recent dismissal of the district superintendent), and a school that is in desperate need of repair? The high school is falling down! Your children will get wet as the roof continues to leak upon them. Get to Delmar! Quick. Stick around and you must by crazy. Or an idiot.

We're crazy. We are crazy for the incredible teachers who work with our children and us to ensure that they get a solid education. We are crazy for the programs that allow my 4th grader to participate in the AHS musical alongside middle and high school students. She also performs in the marching band with many of these same children. Our child's reading teacher supported her as she competed in the district spelling bee at Hackett Middle School.

We are crazy for the community that is built around our school. We have built lifelong friendships with many of the families in our school and in other schools in the district. We're crazy for the many different cultures that our children are exposed to. We are crazy that when our child falls in the schoolyard, an older child is there to help scoop him up and dust him off.

We stood with our child's first and second grade teacher weeks after the massacre at Sandy Hook, and shared our emotions as we understood the love and devotion it takes to guide these kids. Our teachers love our kids, and they let our children know it.

We are crazy about our children's school and look forward to the opportunities that they will have when they get to Albany High School.

The naysayers think we are crazy to support such a project, to make Albany High School a modern and safe facility for the students who attend class there. They think we're crazy to support Albany High School.

We think you'd be crazy not to.