Wes’s surgery officially began at 9:15, and it took until about 11:15 for them to access the heart and get him on bypass. The CT scan yesterday had revealed that a portion of the atria had become adhered to the chest through scar tissue, so the surgeons did what they needed to relative to that. We hear there was some bleeding that they quickly took care of. After the “he’s on bypass and okay” update from the Nurse Liason we went to get our parent badges and walked to The Mission for lunch. We got an update there that everything was progressing fine, and the phone rang again about 1:15 when we entered the hospital lobby to tell us that he was off bypass and Dr. Emani was ready to talk to us.

We saw him at about 1:45 and he told us how well things went. He was able to place a 22cm pulmonary conduit. What he took out was only about 9-10cm effective diameter. So this is a big improvement. Six years ago they had used an aortic homograft due to size, but the aortic variety will calcify much more quickly than a pulmonary homograft. Fun fact. So with a larger size and the pulmonary…type?… Wes should be in really good shape. Dr. Emani seemed pretty jazzed about the arc of this particular conduit. He also placed a (basically Gortex) membrane between the heart and chest wall to lessen the “sticking” for next time Wes’s heart needs access. True Avenger-style for Wes.

We’re about to head up to the cardiac ICU, and they think they’ll be able to take out the breathing tube later today so we’re anticipating one of us staying the night at the hospital starting tonight. In Wes’s words the other day, “Dad will get to stay with me first because Mom got to stay with me in October.” While we’re both sick of sleeping on the apartment’s pull-out sofa and are looking forward to sleeping in the apartment’s actual bed, we’re so happy it went well that yes, Wesley, we GET to stay with you.

It’s Friday and they took Wes back to surgery at about 7:30am. He’s nice and loopy so it went alright. We’ll get updated throughout the day and they expect the surgery to finish up around 3pm. In the meantime we’ll catch up about Thursday.

Yesterday Wes did not need to re-do a Covid test and we scoped out a drive to the coast. Just as we were getting ready to go Dr. Levine called to say that Dr. Emani requested a CT scan to see how much the conduit might have adhered to the chest wall. It sounds like that’s something that can happen when the conduit has been in for a while like Wes’s has. The good news was that radiology was going to fit him in – the bad news was that they didn’t know when they would find an opening and would just call us at some point during the day. But the apartment is close to the hospital and we promised that we would be there at the drop of a hat. After the cancellation and to help Dr. Emani we were willing to do whatever they asked. About 5 minutes after talking to Dr. Levine, though, she called back to say we could head over right then. Our coastal outing was no longer cancelled but just delayed (becoming an uncomfortable theme for this trip).

Wes did amazing during the CT scan and mostly just thought it was really cool. By noon we were driving out of Boston to outside lunch at Allie’s Beach Street Cafe in Manchester-by-the-Sea where we ate REALLY good food.

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We drove around a bit more, got ice cream, and then broke all the rules by walking on a residents-only beach, which unfortunately is a thing in the very Busy and Important community of Manchester-by-the-Sea. When your child loves water and sand as much as this kid, and he’s having surgery, you break rules. Period. Nobody (out of the whole other two people there) seemed to care that we were on their Very Exclusive Beach, although Andrew wasn’t not hoping somebody would say something. Wes said he wished we had brought our bathing suits, and I actually believe it would have been a fight to keep him out of the freezing water if we had.

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Back in Boston we had a drink at Trillium‘s 401 Park location, then were back at the apartment around 5pm to watch another Grand Tour special (Madagascar) and have a quiet evening. Wes had his special-soap bath and wore his Avengers pjs to bed. Because he’s a super hero.

We’ll let you know how things are going.