Monday, January 2, 2017

Never leave a man behind

Josie was 2 years old when Owen was born. Two years and 10 days. When he was born, we wanted to make the transition from single child to big sister easy. On day number 2 of Owen's life, we were told he would be blind. Glaucoma - high intraoccular pressure - would damage his optic nerve and leave him without vision. On the third day of his life, Alecia and I took Owen to Boston to meet Dr. Walton. Josie stayed behind with Alecia's parents in Albany. Nice transition: here's your new brother. We're heading out. Good luck, kid.

Josie has always been resilient. She was fine, spending the day with my in-laws while we went to Boston to meet the doctor who would save our son's vision. And when traveling to Boston became a regular thing, she went along with no complaining or tantrums. Load up in the car, drive 3 hours, see the doctor, hit the aquarium, get a giant burrito, and head for home. She just rode along through it all.

Josie liked Sesame Street, and she adored Ernie, the little orange guy with the round head. She had a stuffed Ernie doll that would travel with us to Boston. On day trips, she would sit in her car seat as we scooted across Massachusettes, Ernie sitting in her lap.

And when we would spend the week in Boston for Owen's surgeries, Ernie would come along for the ride, hanging out in the hotel with Josie, offering her some comfort in a whirlwind of travel, doctors, and road food. She would sleep with that little guy tucked right up to her pillow. After surgery week, we would pack it all up and head home. All was good and easy with Josie.

Until Ernie got left behind.

Rule number one: Never leave a (stuffed) man behind. Never, ever. Ever.

After a week of hotel life, lobby food, surgery, crying, hoping, laughing, protecting, we headed home to Albany, arriving after dark to our little yellow house on West Lawrence Street. We pull in, unload, and start getting the kids up to bed. Diaper change, pajamas, teeth brushing. While getting things ready, Alecia was unpacking stuff when she realized there was a problem.

"We forgot Ernie." She said. "Crap."

Now, I consider myself a problem solver. I don't worry about problems too much. I just get into gear and make the best of situations.

Alecia and I formulate a plan: It's Thursday night, and the Toy Maker store is still open for another 45 minutes or so. I'll get Josie ready for bed, keeping her attention away from the missing Ernie doll. Alecia will head out to the toy store, and hopefully find a replacement Ernie so Josie has her companion to cuddle with while she sleeps. Easy peasy, lemon squeezy.

Alecia heads out to the store, arriving just before closing time. She comes home.

With Bert.

No Ernie dolls were available, so she got the next best thing. She bought a Bert doll. A yellow, cone headed, unibrowed, wild haired Bert doll.

Our plan was working splendidly. Or failing miserably. You pick.

Josie is all ready for bed, in her PJ's and tucked in. We simply place Bert in bed next to her, like this is the doll she has been cuddling with all her life. Maybe she won't notice.

She looks at us with a "what the fuck is this face." Alecia explains that Ernie got left behind in the hotel in Boston, and his friend Bert was here to keep her company.

Now, Josie is pretty smart. She once questioned how Santa can actually deliver gifts to our house because the pitch of the roof was too great to safely land a sleigh. Seriously.

And she wasn't having anything to do with Bert. There were tears and consoling. It took some time, but we finally got Josie to settle down. Luckily, it was Thursday, and although we had just endured 4 days and nights in Boston, we were heading back on Saturday for a follow up appointment with Dr. Walton. We would simply stop at the hotel and see if they found our pal Ernie.

Saturday comes, and we swing by the Holiday Inn on Blossom Street and check with housekeeping. Guess what? They had Ernie. We got him back. He still sleeps next to Josie, some 9 years later.

Never leave a man behind.

Sunday, January 1, 2017

Clogged tube

Autumn 2007: We travel to boston on a regular basis - at least once per week - for pressure checks for Owen's eyes. He was born with glaucoma, and he requires frequent monitoring of his eye pressure to preserve his sight. If the pressure goes up, Owen has surgery.

So far, Owen has had two surgeries on his right eye. The first was to place a small tube in his right eye to control the draining of fluid from his eye. The second was to reform the shape of his eye after too much fluid drained out. Owen was 21 days old for his first surgery. His first few months of life have been a whirlwind of travel to Boston, hotel rooms, road food, and close family time. Getting poked in the eyes is his normal.

We have some fun times as we go. After Owen's appointments with Dr. Walton, we often go to the New England Aquarium. Josie, Owen's big sister, loves the jellyfish exhibit, and she enjoys watching the penguins.

We find restaurants we like. Fast food, and small little places that we can grab something quick. A burrito place near Dr. Walton's office, Viva Burrito, is where we purchased the burrito that Josie was holding in the famous "I Like My Burrito" video. (It's famous only in our family.) To this day, it's fun to go to Viva, get burritos, and have Josie say in her baby voice, "It's not very hot. I like my burrito."

There are moments of magic. Quiet times that are shared only between Alecia and I while the kids are sleeping in the tandem stroller. We have snacks and coffee and tea at the Spotted Apron, chatting quietly while the children snooze and the snow falls outside. We occasionally stroll down Charles Street, checking out the shops and brownstones. Once as the kids slept in the stroller, we headed into a toy shop called the Red Wagon. We quietly and joyfully shopped for toys for the kids. Future Christmas presents. Occasionally, we would head over to the park and spend some time with the Make Way for Ducklings statues. Good times. Pure magic. Boston becomes our town. And to think none of it would have happened if poor Owen didn't draw his unfortunate lot and have glaucoma.

Early November, and we start to notice things are not going so well with Owen's right eye. It's red, swollen, and he keeps it closed much of the time. But one day, things are particularly bad. Things are looking cloudy in his eye, a sign the pressure may be increasing. We head to Boston for an appointment wtih Dr. Walton. Sure enough, pressure has increased, and Owen's third eye surgery is scheduled for the next week.

We're prepared. My wife has the hotel room already booked, as she always has 4 weeks of hotel rooms reserved during Owen's first year. Alecia's parents take the week off work. We know the drill: head to Boston on Monday morning while I stay in Albany and work. After work on Monday, I drive to Boston, picking up road food on the way and hoping to make it by 10 pm.

The morning of surgery, Tuesday, we rise early and get Owen in the stroller. Alecia's mom sneaks over to our room to keep an eye on Josie, and Alecia and I sneak off to the quiet streets of Boston with Owen in the stroller. Past the parking garage, the Yawkey pavillion, the bike racks. Into the Mass Eye and Ear Infirmary. Floor number 8.

We push the call button, and the nurse buzzes us in. Familiar faces lead us to the prep room, and Owen dons the world's tiniest hospital gown once again. We wait, nervously chatting about everything and nothing, and holding our son who will have his third eye surgery in as many months.

Finally, the transport guy arrives and leads my wife, holding Owen, down to surgery. She knows the drill. Dr. Walton takes the boy, and Alecia says her goodbyes. No need for mom to stay and watch her son being put under general anesthesia, once again.

Alecia returns to the hospital room, and we get a pager and head to the cafeteria. We sit by the window with our coffee and tea and chat as doctors, nurses, and other folks get their morning food. The wait is now just the wait. We are anxious, but we've been down this road before, and the routine of it all makes it oddly comforting. We head back to the hospital room, and finally surgery is done.

Alecia takes the elevator to the surgery floor to get Owen. Dr. Walton informs her that the tube was clogged, and that's why his eye got cloudy. Pressure went up, cornea got cloudy. Stupid clog. When Owen is ready, he returns to the room with Alecia, his little eye covered with the metal protective patch. A small BandAid on his foot indicates the place where the IV was. After an hour or so, we are discharged. We remove the tiny gown from the boy, and head down the elevator. The Yawkey pavillian, bike racks, and parking garage. Hotel room. Food, rest, and family.

We follow up with Dr. Walton the next day. Surgery went well, and we are free to go. Follow up next week.

We remind Dr. Walton that next week is Thanksgiving. "Ok," he says, surprised that we would ever think he would consider taking some time off.  "See you then."

We have a son with glaucoma, and we're amazed with how much we have to be thankful for.

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.