We promised a final update last night but we couldn’t do it justice after getting back at 9:30 and crawling immediately into bed. Out lovely webmaster, Sarah, posted a quick note so everyone knew we were all ok.

After the initial excitement of the our last update from the nurse liaison around 4:30 (mentioned in our last post) and then not soon after a visit from Dr. Emani we were recharged with the idea of seeing Wes soon. We grabbed dinner and a celebratory drink and moved upstairs to the Cardiac ICU waiting area. And then we waited, and waited, and waited. Around 9:00, 14 hours after first walking into the hospital, we were finally brought in to see Wes and it was all worth it. He looked amazing. He was (and still is) hooked up to a countless number of tubes and wires and sensors, but he looks peaceful and … surprisingly really big for his crib. I don’t know why I was expecting him to look different but I was so relieved that it was unmistakably Wes. His beautiful blond hair and that signature pale skin.

After such a long, emotional day and the overwhelming relief of being able to finally see him, mixed with my dislike of blood, I became a little lightheaded but was saved by Wes’s nurse Laura who brought me a ginger ale. We talked with the nurse a little, said our goodnights to Wes and walked back to our apartment.

After a good night ‘s sleep we walked back to the hospital around 8:00 this morning. We were greeted by Wes’s day nurse, Shawna, and given the good news that he had a great night. He’s still figuring out his heart pacing and at one point became dis-synchronous which means his chambers weren’t moving at the same time. It was most likely because of normal swelling. He was brought under control by an external pacemaker. There is a normal and expected ‘dip’ in stats and levels about 12 hours after such a large surgery that includes bypass, which we are in the middle of right now. The positive sign is that there is conductivity around his heart which doesn’t rule out the possibility of needing a permanent pacemaker, but it’s a good sign that there is some hope he won’t.

My dad told me a few months back, after watching all four of his grandsons for a few hours, that he could tell Wes was a fighter. He was the youngest and by far the smallest and he held his own with his older brother and two older cousins. I think anyone whose comfort object is a toy hammer, and that’s only because his mean parents decided his toy golf club was a little unwieldy for the hospital, has what it takes to come out of this situation with a big smile and full of pep (you know the other word) and vinegar.

One of the cardiologists came in to review his information. He’s from New Jersey (commented on Emily’s Long Beach Island t-shirt) and his name is Henry so he’s good in our book.

We’re now just relaxing in his room, reading him stories and trying to keep ourselves occupied.

Tomorrow our moms will be here around lunch followed by my dad and Henry later in the day. It will be so nice to see Henry, we can’t wait to see his big smile and give him a huge hug.

Sarah here… I just heard from Andrew and Emily who asked me to send a quick note. They’re back at the apartment and are getting some rest after what I can only imagine was an unbelievably long and difficult day.

Much to everyone’s relief (but not surprise) Wes is resting comfortably and doing great!

More updates to come tomorrow…

It’s 4:30 and Wes is still in surgery as expected. We were told 6-8 hours going in so things seem to be right on track. Doris, the nurse liaison has given us updates every hour or so, just as she said she would. The repairs are moving along but we don’t know much else. During the surgery Wes is on a heart/lung bypass machine so they can paralyze his heart to work on it, and we found out they cool his body down to around 55 degrees to reduce oxygen consumption and increase the safety of long surgery. As they wrap up they slowly raise his temperature back to normal and at some point his heart will begin to beat again. They will also do another echocardiogram to ensure the repairs are working as planned. When he is in the ICU they will come get us so we can see him but he will be sedated. One parent can stay in the room overnight but the nurses have suggested, since he’s sedated anyway, that we should take the opportunity to get some sleep away from the hospital.

In the meantime, enjoy this picture of Wes last night at dinner in our apartment. Obviously he was deeply affected by the anesthesia from his MRI and had almost no appetite…

The big day, surgery day, started off early. We had to be at the hospital by 7:00 so we left for the morning walk to the hospital at 6:30. We were checked in and after a short wait Nurse Maureen took us back to the pre-op holding area. This area was very busy with patients, families and nurses. Around 8:00 another wave of nurses and doctors arrived to meet their patients. Dr. Al, the anesthesiologist from yesterday’s MRI stopped by to say hi to Wes which meant he got a big smile. Another anesthesiologist came in to give him the oral sedative. We held and rocked him, Emily sang “Happy Birthday” per Henry’s suggestion before we left home, we gave him lots of kisses, and they took him in at 8:30.

We went back to the waiting area, checked in with the nurse liaison and then Dr. Emani stopped by. After reviewing the MRI, based on the aorta’s location, he’s decided to pursue the Nikaidoh procedure which will involve moving (translocating) the aorta. Dr. Emani also confirmed that a pacemaker will likely be needed, which we had been anticipating since our first meeting with him last August.

We grabbed breakfast at Brueggers before coming back to start the long wait. We will be updated every 90 minutes or as necessary. We’ll have multiple updates today so please check back.

As I was writing this update the nurse liaison came by to tell us the surgery officially began at 9:45.

Thank you all for following and for all of the kind thoughts and well wishes.

A challenge will bring out either the best or the worst in a person. We are pleased to report that today it brought out the best of Wes. It had all the potential to be fraught with meltdowns but he put his magical twist on things once again.

We arrived at 9am as requested for the sedated MRI and echo. Wes had fasted since dinner and had a little Pedialyte before 7am. After that we pretended we didn’t know what food was. Except for the Starbucks coffee and snacks we snuck while walking behind the stroller. Unfair, we know. The unit was running an hour behind schedule, so we hung out for a little over an hour with a hungry kid who was in the middle of missing a nap. Meltdown? Crying disaster? Nope. He was a DOLL. Completely.

At 10am we were called and, after re-reviewing the surgical consent form re-signing some papers with Dr. Nuri since yesterday Dr. Lee forgot to sign his papers, we met Nurse Mike. He and the other various people who came through, introduced themselves, and told us what their jobs were (don’t quiz us) all joined the Wes fan club. Anesthesiologist Al gave Wes a cocktail which he gulped down and then Wacky Wes showed up. The kid got super loopy and I’m sure we were supposed to be very concerned and serious, but we couldn’t help but laugh at his little drunk face and smiles. We kissed him goodnight at 11am and headed out for some air and lunch.

We received updates each hour and were back in the waiting room when Mike came to get us around 2. Wes was still pretty out of it but adorably cranky and hoarse (from the breathing tube) and snuggly. He had some milk and we were on our way by 3:15. We kept a close eye on him when we got home as instructed since his balance and coordination was still messed up from the anesthesia. By dinner he was feeling like himself with large smiles of mouthfuls of food. Wes played in his last bath for a while, things went a little sideways, (why wouldn’t you poop in the tub the night you’re supposed to wash with the special anti-germ soap?), but he’s clean, pj’d, and sleeping happily.

Tomorrow we will arrive at 7am for his 8:30am surgery.

Thank you to everyone for leaving such kind and supportive messages. If you haven’t done so already, feel free to click the ‘follow’ button at the top left of the page which will enable you to automatically receive posts and updates directly to your email.

Give Sarah a call (518-368-2278) if you need technical support!

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.

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.

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.

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.

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.

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.

Who:  Andrew and Emily.

What:  Starting a blog, with technical assistance from Auntie RaRa.

Where:  Home in Scotia, Boston Children’s Hospital, and then home again.

Why:  Update our family and friends on our son’s open heart surgery.

When:  Now! And continuing through two days of pre-op testing, surgery on April 1, and a speedy recovery.

Wes:  Our sunny, mischievous 13 month old son who keeps us on our toes and eggs-on his 3-year-old brother Henry every chance he gets. We’ve never met someone who smiles as big, drinks as much water, gets as offended at not being allowed to splash in the toilet, or loves baths and peek-a-boo as much as you, Wes. Wesley Ryan, Messy Wessy, or whatever your name is, you leave us shaking our heads in amazement and laughter, and we are silly in love with every bit of you. We know you’ll do great!

Love, Ma and Da