Day: March 30, 2015

Day One

Andrew and Emily6 Comments

Our first day was a long one and started early, we had to be at the hospital at 7:30 am. We started out in Cardiac Pre-op where we met Alia, an NP who would guide us thought the day. First was Dr. Lee, a cardiac surgeon who provided a quick overview of the procedure, discussed the risks and expected outcome, and guided us through the consent forms and other paperwork. Next we went to the lab where Wes had some blood drawn which was about as popular as you can imagine. Then we met an anesthesiologist who talked about the anesthesia plan for his MRI scheduled for tomorrow and the surgery itself on Wednesday.

Wes Gown
Wes after the chest X-ray. Even though you can’t tell he’s a fan of the hospital gowns.

From there Wes had his height (29″) and weight (18 lbs 5 oz) taken along with an EKG, oxygen saturation and an attempt at blood pressure which was as popular as the blood draw. Next was a chest X-ray taken by two extremely nice older women who were straight out of an episode of Coffee Talk. After, we sat down with Alia to discuss the preparation for the next couple days, review family history, and ask some questions. From there we were able to take a quick break and finally get a coffee before taking a tour of the cardiac ICU and recovery rooms. To wrap up the morning we met with Dr. Levine, the cardiologist we first met in August. Dr. Levine has been renting a house on Long Beach Island, where we also vacation, for the last twenty years so part of our discussion was recapping last summer (she was leaving the day after our first appointment) and talking about the coming summer where we found out we’ll be there at the same time.

Wes Snack
A few minutes later having a snack and much happier.

After a quick lunch we met with Dr. Emani, the surgeon who will be operating on Wes. We discussed the procedure, the different approaches available to him and asked a lot of questions. He also got to meet Wes for the first time since Wes did not make the trip with us in August. Dr. Emani seemed taken with Wes’s big smiles and endless energy even after missing his morning nap.

We left the hospital at 2:00 and made the short walk back to our apartment, stopping at Star Market along the way for milk, cheese, fruit, pistachio muffins and vodka. Just the essentials.

Wes fell asleep in the stroller before we were off the hospital grounds and is now napping in his crib. The sun has come out so we may take a walk when he wakes up.

Waiting
This is what most of the day looked like…waiting.

Tomorrow we have to be back at 9:00 am with an angry Wes who will not have had breakfast. Luckily we will be able to hand him off to the nurses for his MRI, and luckily for them anesthesia will be administered shortly thereafter.

Day One

We’re Here

Andrew and Emily7 Comments

We left for Boston around 1:00 pm on Sunday, March 29th. It was an uneventful drive with a snack stop along the way. Because of the overwhelming generosity of our family, friends and co-workers we were able to lease a corporate apartment about 3/4 of a mile from the hospital (only 15 minute walk) in the Fenway area of Back Bay. We checked in, moved in our stuff and had a nice dinner before putting Wes down for bed. From the window of our apartment we can actually see the entrance to the hospital.

Tomorrow is an early start to a long day at the hospital. Wes will have a chest x-ray, blood work and other pre-op procedures. We’ll tour the cardiac surgery center and meet with the surgeon, Dr. Emani.

March 29, 2015
March 29, 2015

Although nobody would choose to go through a situation like this we always remember how fortunate we are to be so close to a world class hospital and, because of the excellent health insurance offered by the Village of Scotia, not have the added stress of the enormous cost of Wes’ procedure. It’s humbling to think of the families that have to travel from much further distances to an unfamiliar place without knowing how they will be able to afford their child’s procedure much less the trip.

Thank you to all of you who have made this as best a situation as it can be.

We’re Here

The Backstory

Andrew and Emily2 Comments

We found out that Wes would be born with complex congenital heart disease midway through my pregnancy. The 20 week ultrasound tech thought she saw something odd in the baby’s heart but he was too squirmy for her to know for sure. Two weeks later we had our first fetal echocardiogram. We assumed there had been a mistake and we’d leave the office having confirmed that our son’s heart was fine. But after the echo the doctor began our meeting with, “Let me start with how a normal heart works.” We knew with that statement we weren’t going to be in the normal camp.

Wes has L-Transposition of the Great Arteries with associated ventricular septal defect and pulmonary stenosis. This means that his ventricles are switched, there is a hole between them, and there’s an obstruction at his pulmonary valve. More information on LTGA can be found on a number of sites including the American Heart Association.

February 12, 2014
February 12, 2014

We spent the second half of the pregnancy attending many doctor’s appointments, meeting with a surgeon, NICU doctors, etc. The doctors prepared us for the likelihood that Wes would need surgery before he came home from the hospital. In a happy twist, the pediatric cardiologist who examined him after birth told us that he appeared stable and he didn’t expect surgery would be necessary. Although he was still a NICU patient, he stayed stable, ate well, and threw all our preparations to the wind by being discharged only a day after Emily.

Over the past year Wes has remained balanced, which seemed to confound his cardiologist, never needing surgery or medicine. We’ve known for a year and a half that surgery was inevitable but not knowing when it would happen. In August we went to Boston to consult with a cardiologist and surgeon regarding the surgical options. After those meetings we decided to pursue a double switch at Boston Children’s Hospital, a surgery that isn’t performed at Albany Medical Center. Following our January local cardiologist appointment the Boston doctors reviewed Wes’s record again and recommended that we move forward with the surgery.

It’s hard taking our kid to have surgery when on the outside he looks as healthy as possible, as many of you that know Wes have seen. But there have been times over the past weeks when the coloring in his mouth looks a little off, or he starts breathing differently for no apparent reason and we suspect that we’re starting to see some of the symptoms that the doctors have been asking about for over a year. We have enormous confidence in Wes’s team, both locally and in Boston, and so we will do our parenting job – weigh it all and move forward with what we believe to be in our son’s long-term best interest.

Thanks for all the support.
The Backstory