Tuesday was the catheterization and Wes was amazing. We arrived at 9:15am for our 9:30am appointment and set to waiting. Dr. Levine, his cardiologist at BCH, met with us while we waited. She shared that the echocardiogram on Monday suggested that the pressure was a result of narrowing at the base of the condit and at the left pulmonary artery branch – basically at two connection points instead of all along the length of the conduit itself. Theoretically, if those two spots got dilated, maybe with the addition of a stent, we could get more time with the conduit than originally thought.

At 10:15am Nurse Erin (she’s wonderful) took us back to our room in the cath lab. The previous case was going long, and we ended up waiting until 1:15. We read, watched TV, and listened to music. Wes hadn’t had anything to eat since the night before, and nothing to drink since 7:30am. Despite plenty of reasons to break down and throw a fit, he once again hung in there, mentioning maybe twice that he was just really hungry.

At 1:15 they were ready to prep him and they took him back at 1:45. Dr. Levine came in at 4pm with an update: they got great pictures and measurements, but the configuration of the conduit in relation to the coronary arteries prohibited dilation or installation of a stent. The great news is that his heart muscle looks strong and healthy. However, without a safe option for dilation we will need to address the pressure issue through a conduit replacement surgery. We knew the surgery was there in the future, it’s just coming sooner than we had originally thought. Oddly, though, when it comes is pretty much up to us, just recommended within the next year. HIs right ventricle pressure is at 3/4 of his systemic pressure when it would be 1/4 of the systemic pressure in a normal-functioning heart.

Anyway, back to the heart of the story, Wes did great. He was cheerful coming off the anesthesia, if a little confused and forgetful. We got to tell him the joke on his popsicle stick every 20 minutes for a couple hours and it was new to him each time. The purpose of the IVs in each hand got revisited on the same cycle. By 7pm or so he was eating and continued to eat… and eat… and eat. For about an hour and a half. Slow and steady wins the race when you’re making up for lost time (or meals in this case). Nurse Mel (also really wonderful) on the night shift took out one of his IVs and got him up and walking around.

We had a relatively easy discharge on Wednesday morning, and were on the road home by 9:45am. His incision is looking great and he moves more and more smoothly. We couldn’t be prouder of him. He could have, and would have had every right to, fall apart dozens of times. Instead, his resilient spirit saw him and us through this trip. He is one of a kind.

For now we sit tight, follow up with our local cardiologist, and plan for another trip to Boston in 2021. Thank you for all of the love and support – Wes is lucky to have so many people love him.

Hi Everyone – Sarah here just giving a quick update from Andrew & Emily.

After a long day of waiting, Wes is recovering after his procedure! He did great and the doctors got the information they were looking for. He’s working on a popsicle now and seems intent on getting the IV tubes removed.

We’ll post another update in the morning.

Thank you for the well wishes!

…in the best way possible. Today we were reminded how much we like Boston, how amazing BCH is, and how resilient, cheerful, and strong Wes is. We had 5 hours of pre-procedure appointments at the hospital beginning at 7:30am. Although we talked with Wes about the various appointments he would have, he still had a lot of new stuff thrown at him. In typical Wes style he took it in nonchalant stride, aided by an “I Survived…” chapter book (yes, we finished the whole thing today with all the waiting), the Hamilton soundtrack, and a limitless supply of snacks and Lifesaver mints. He rocked the chest x-ray, EKG, and echo; was an active listener during discussions with the cath doctor; powered through the lung perfusion scan and bloodwork; and was very patient through the between-appointment waiting. The machines, the IV for the lung scan dye, the blood draw, the back-of-throat Covid swab… he stuck with us the whole time with barely a flinch. His relevant questions for the cath doctors and nurses included “Excuse me? Where will I sleep in the hospital?” and “Um, excuse me? How long will my nap tomorrow be?” Unfortunately Dr. Levine was tied up when it was time for our appointment with her so we’ll talk with her tomorrow instead. It did mean we got to leave a bit early today though…

After we were done at the hospital we had a late outdoor lunch on Newberry St. and walked over to and along the river for a bit. He had a late afternoon FaceTime with Henry, built a Lego, and after dinner the evening wound down with a bath and some pre-bed TV shows. 

It’s different being here in Covid times versus five years ago, but Boston is still Boston – we’re fans and have always had a soft spot for it. We’re in a convenient location, lucky enough to be staying in a hotel near the Prudential Center. The weather is still nice enough to take walks along the street and river. And the prevalence of masks on the street is truly impressive (who thought that would ever even be a thing?!).

Tomorrow we’ll head over to the hospital for his 9:30am check-in. Stay tuned and we’ll let you know how it goes!