Sunday night was a good night, despite medicine struggles before bedtime. Evidence suggests liquid Lasix is gross, and the next medicine was the color of sludge which will psych anyone out. When Wes finally lost the fierce battle and took the ugly-looking one he paused, thought, and said, “It tastes, like… chocolate.” He’s lucky he’s cute. On Monday morning Wes was ready to walk down to the lobby with Dad to meet Mom. The kid got stood up when Mom overslept, done in by Saturday’s Night of Many Wakings. By the time Emily rolled into the hospital at 9:30am Wes was having an echo done in his room and watching Despicable Me 3. The rest of Monday was spent moving around, gauging pain, visiting the rooftop garden, and other general activities. Dr. Emani stopped in to check progress, too.

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It became clear that he’s ready to go home, so early Monday evening Andrew walked back to the apartment to pack stuff up. Wes was awake at 5:30am Tuesday so Nurse Jess had us go down for a pre-discharge chest X-ray. Did a lot of sitting, reading, and reviewing do’s and don’t’s and medicines to prep for discharge. The last IV came out and the bandages came off the chest tube spot and the chest incision. A couple signatures later we are on our way a little after 1pm! We’ll arrive home around dinner time and Wes was telling everyone he saw about his plan to surprise Henry, who has no idea Wes is coming home today. Turn-about is fair play, after all.

Wes is really happy to be going home, of course, and so are we. He’s moving gingerly but making good progress each day. He’s back to his chatty self and now that all of the bandages are off he’s officially run out of things to fret about. We will fret a bit about activity restrictions. He told the discharge NP that he and his brother ‘really don’t rough-house that much’ which prompted eye rolls from Mom, Dad and the NP who has 3 boys, a 7 year old and 5 year old twins (one named Henry).

To think that we’re heading home a week and a day after arriving and only 4 days after surgery is overwhelming, but also somehow expected when you’re dealing with a kid as stubborn, strong, and special as Wes.

(Long post alert)

We got to see Wes about 5pm on Friday in the cardiac ICU. He looked so good. Nurse Yoko took us on a tour of his situation, and said that they expected to take the breathing tube out later that evening. He would be sedated until just before, so we left, walked to dinner at Bar’Cino, collected some things at the apartment, and headed back to the hospital, arriving about 8pm. They did take out the breathing tube shortly after that. He was quick to wake up from sedation, and woke up rearing to go and take the breathing tube out himself, thank-you-very-much. It took a team of five to hold him still/safe and remove it. He was given medicine to lower his spiking blood pressure but was off it by morning.

Overnight Wes mostly slept, he was given an ibuprofen-type pain reliever but it increased the fluid draining from his chest so that was abandoned. Andrew woke up around 5:45 to hear Wes and Nurse Ashley discussing various topics including favorite TV shows, where she lived and, for at least the 6th time, what the IV tube in his left hand ACTUALLY was.

On Saturday morning Dr. Emani stopped by briefly to check on progress before heading to another surgery (on a Saturday after leaving the hospital around 9:30 the night before). A little later Nurse Justine had him sit up at the edge of the bed. When she asked if he was done and wanted to lay back down he decided he would rather stand up. So he did! It was very hard for him and painful but he did it. At 10:30 Saturday morning he was moved to a very good room in 8 East, the regular cardiac unit. Nurse Carly got us nicely settled in, and Wes’s first post-surgery hint of a smile was finding “Avengers: Age of Ultron” in the movie options. Sound familiar? Yes, he watched it Wednesday to feel better, too. Before bed Saturday Wes had sat up again, sat in a chair, and gifted his first true post-surgery smile to Henry via FaceTime.

Saturday night was more restless than Friday night, and Nurse Cayla was very attentive. He appears to be her first patient to demand to get out of bed at 3am the day after surgery and just sit in a chair for a bit for some story time. He was weaned off oxygen in the night, dozed a bit, and was back sitting in his chair by 6am.

Sunday morning saw an EKG and chest x-ray to confirm that the pacing leads and chest tube could come out. Mid-day the wires and tubes did come out and almost immediately after Wes is moving much more easily and seems more at ease. His appetite is already picking up. We know he’s feeling more and more like himself because he has started planning how he can make this room his house. We don’t know why he’s always thinking about how to modify space to better suit his needs and where the kitchen should go…

This is a tough post-surgery road. He has dealt with a lot of pain and fear of pain. He’s had tears and frustration and all the other understandable feelings. The medical team does a truly great job with round-the-clock pain meds and, when appropriate, a slightly amnesia-like drug for things like removing chest tubes. But Wes is doing very hard things. Both physically and mentally. He’s pushing through and is amazing.

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.

We heard from the surgical coordinator at 8:30 this morning that Wes’s surgery will happen tomorrow, Friday. They are shifting two other cases to accommodate us, and though we don’t envy the stress those families now have, we understand they are local cases and hope it’s a little less disruptive for them. We were so relieved to hear that it’s only a one day delay, which is weird to say because you of course don’t want your child to have surgery. In this case, though, it needs to be done. It’s not an emergency and yesterday Dr. Levine assured us that although she would do everything in her power to make this surgery happen now, if it needed to happen later in the summer or September that Wes would be fine. But we’re here now. And have done the pre-op stuff. And after the logistical and emotional planning that goes into a trip like this, we were having a hard time imagining that it might be delayed for… weeks? til the end of the summer? That we would just go home and need to do this again..

We have a found day, now, and as long as we won’t need to re-do Wes’s Covid test we’re thinking we might drive a bit to the ocean. We’d go for a walk but after the past couple days of exploring and walking Wes will spontaneously combust if we suggest it.

The look on Wes’s face when he opened the apartment door and Henry was on the other side was wonderful. Surprise, confusion, disbelief, and JOY. He was speechless until he could exclaim, “Wait, what the heck?!” The four of us had lunch with Mollie and Bruce, and walking there Wes had pep in his step for the first time since leaving Scotia as he hopped, skipped, and jumped alongside Henry. After lunch we walked through Brookline Village, got some coffee, and did some outdoor lounging. While Mollie went to settle in at the hotel and the boys and Emily played at the apartment, Andrew and Bruce grabbed a beer. The four of us had a snack-y dinner while watching a Grand Tour special. The boys snuggled up for bed together with all of the giggles you could hope for.

Wednesday morning the four of us hung out in the apartment until we ventured out to the Amory Park and explored the Hall’s Pond Sanctuary. We grabbed lunch at Tatte and ate it at nearby Monmouth Park where the boys explored the little playground. We wandered home along the Emerald Necklace, and after the boys spent some more time playing Legos and watching videos it was time for Mollie, Bruce, and Henry to head home. Being left here in Boston was harder than doing the leaving in Scotia, and much harder than we expected. The three of us snuggled up on the couch and read together, then Wes suggested “Avengers: Age of Ultron” and it did the trick of perking him up.

Then the day got hard. We received a call from the hospital at about 4pm that the Thursday cardiac surgeries have been cancelled because the cardiac ICU beds are full. We spoke with both the cardiologist and the surgeon. It’s upsetting and disappointing, and we’ve been trying to work through it. We don’t know what the next steps are or when the surgery will happen. Since the calls we’ve been sitting and waiting and trying not to lose our minds. We were hoping to hear something this evening/tonight but it’s clear we’ll hear tomorrow instead. The only thing we do know is that we don’t need to be at the hospital at 6am tomorrow. Wes is happy, we’re a bit lost. We’ll share when we know what comes next.

The Saturday before we left for Boston we all took a quick trip up to camp in the big yellow truck to put the boat in the water. The docks were in early and the sun was out so it seemed right. It was all worth it to see the smiles.

Sunday was busy with packing and wrapping up loose ends before leaving for Boston on Monday. We’re staying in an apartment in Brookline, about a 15 minute walk from the hospital. We arrived about 3:30 on Monday, unpacked, and then set out to explore our new neighborhood including a dry-run walk to the hospital to make sure we knew where we were going. We picked up slices of pizza and Wes watched a few shows before going to bed.

Today, Tuesday, was an early and busy morning of pre-op appointments. We met with Dr. Emani to go over the surgery, and Wes had a chest x-ray, EKG, echo, and a (dramatic) blood draw for labs. It’s just about noon and we are waiting for Henry to arrive!! Bruce and Mollie are bringing him out for a pre-surgery visit. He’ll stay with us tonight and they will take him home tomorrow afternoon. The trip was a surprise for Henry until this morning and as of this moment is still a surprise for Wes. Last night Wes was missing Henry a lot, and we can’t wait for him to open the door and have Henry on the other side. The weather is beautiful so we’ll see what Brookline has to offer.

When we left off, Wes’s cardiac catheterization last October was unable to resolve the issue that prompted it and so the next step was surgery. Wes is now scheduled for open heart surgery on Thursday, May 20 to replace the pulmonary conduit they installed 6 years ago. We’ll be heading out to Boston on Monday, May 17 for his pre-op appointments the morning of Tuesday, May 18. The estimated recovery time in the hospital is 7 – 10 days, putting us back home sometime Memorial Day weekend.

We are pleased that the weather should be nice in May, and are very happy that he should be healed up in time for Schroon Lake summer swimming and two weeks in LBI in July. Neither of us wanted to draw the short straw to be the one to tell Wes he has to stay out of the water…

We found a small apartment to rent for a couple weeks in the Brookline neighborhood, just a 15 minute walk from the hospital (both of us will be at the hospital during the day but only one can stay each night). Already brainstorming activities to take along. Keeping a 7-year-old occupied will be different than a 1-year-old, although I bet he would still let us push him around in a stroller all day…

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We have been happily distracted the past couple months by moving two blocks away from our old house and settling in to our new (really great!) house which happens to be Andrew’s childhood home. Wes has decorated his room with Avengers posters and spends a minimum of 2 hours each day thinking about who his new favorite Avenger is (it changes many times every day). He has also taken advantage of the adjacent elementary school parking lot to master his two-wheeler and is SO proud of himself. Now, though, this trip has snuck up on us and here we are. Stay tuned for updates later this month!

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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!