…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!

Who: Andrew and Emily, again. (Hi!)
What: Updating this blog, likely with assistance from Wes’s Aunt Sarah, again.
Where: Boston Children’s Hospital, again.
Why: Update our family and friends on Wes’s upcoming short trip to Boston for a cardiac catheterization.
When: We travel to Boston on Sunday, October 4 and will be returning home on Wednesday, October 7.
Wes: Wesley Ryan is now a six-year-old first grader. He is funny, hard-working, and particular. Self-confidence and pride abound, as do compassion and a willingness to share literally anything he has. His world completely revolves around his older brother…and snacks…and gum. He loves Lego and helping. He still loves being in water, does a mean cannonball, and is surprisingly good with flippers and a full-face snorkeling mask. There’s always a song in his head and his knack for the lyrics is probably helped by his amazing memory. The highlight of any day is catching him dancing and singing along with whatever current obsession is on repeat. We could go on but would never be able to capture all that he is. We just shake our heads wondering where on Earth he came from, amazed at our good fortune that he is part of our family.

A little more about this trip: The need for a procedure is not a surprise. We were told 5 years ago that the typical timeline is 5-8 years, though for some reason we just assumed we’d get to 8 years, maybe even 10. Wes has been seeing his cardiologist only annually since 3 years post-op. One thing Dr. Kamenir has been keeping an eye on is the difference in pressure from one side of Wes’s homograph conduit to the other – it has been increasing over the past couple years. (During his prior surgery the homograph was installed from his right ventricle to his pulmonary artery to bypass the pulmonary valve stenosis.) At this year’s June appointment the pressure differential had reached a point where we should figure out what’s causing it – there could be scar tissue or some calcification of the homograph. It’s not something that will get better on its own – a little investigation was only going to be a matter of “when,” not “if.” The most likely scenario is that the cardiologists will install a stent through the catheterization to ease the pressure. We know (though it lives FAR from the front of our minds) that at some point another surgery will be necessary to change out the conduit to a larger, fresh one, but a stent now would let us delay that a couple more years. So here we go…

Happy Valentine’s Day,

We have formed Team Wes to participate in the 2016 Capital Region Heart Walk on Saturday, June 11. Donations and proceeds from the walk support the American Heart Association, which does so much to help all of our hearts.

Please consider joining us for the walk and/or contributing towards our team goal.

If you have any questions, please feel free to email us at: bkmj75@yahoo.com

Thank you for your continued love and support,

Uma & Poppy (Mollie & Bruce)

 

We’ve recently had some welcome reminders of how many people were with us during Wes’s surgery and recovery via this blog. So let’s catch up!

In general, Wes has had an eventful month since our last update in all the good ways. He’s sprouted all four molars and began walking. He still crawls for distance, but cruises furniture like a champ and will outright walk a solid four or five feet for something worthwhile (i.e. anything Henry is holding. Or just Henry. Or food.). It’s crazy to watch the firecracker teeter around on his extra-small size 3 feet. And we nearly burst ourselves when we see how proud he is of himself.

Medically, Wes has had a happily uneventful month. His Holter monitor last month showed only a single missed beat over the 24 hours and a few premature atrial beats which he had also been experiencing before the surgery. Dr. Kamenir was pleased with the results of the monitoring as well as with our second follow-up appointment a couple weeks ago. The echo shows that everything continues to heal, the conduit is doing well, and the rhythm blips don’t suggest he needs a pacemaker right now. We will see Dr. Kamenir again at the end of July. That appointment will involve another Holter monitor and coincide with a lung scan (to recap, at discharge the profusion to Wes’s lungs was 76% right, 24% left. This coming scan will show if time and healing has improved the output to the left lung.).


Possible future follow up procedures could include conduit replacement, valve replacement, and of course of the lurking pacemaker possibility. However, we have reason to be optimistic that any follow up procedures are far down the road.

Other than the thin scar you would never know that two months ago Wes was still in the hospital, recovering from an 8 hour surgery. His outlook is rosy and he challenges us to keep up with him daily. He loves to rough house with Henry and indulges him by letting Henry lead him around with a ribbon (“This is my puppy Wes!”). We hope that our next update will report that he’s begun to comply with “No touch” and “Not for Wes,” but we won’t hold our breath. Occasionally he does throw us for a loop: The other night he woke up and his cry suggested a nightmare. We struggle with thinking he might have had a bad dream associated with his ordeal. He calmed down with a snuggle and was all smiles the next morning, but still…


I’m sure we’ve said it before, but it’s overwhelming how many people are vested in knowing Wes is doing well. We are lucky beyond words. Bring on Summer.

It appears that once we got back to Scotia everyday life had us continually postponing writing an update. We kind of left it hanging, huh?

Life back at home has been great. Henry is thrilled to have Wes home to play with, we are happy to not be sleeping in the hospital, and Wes is himself. He’s back to crawling and cruising around, eating up a storm, and is sleeping soundly in his own dark, quiet room. Everyone is happy that he’s back to taking baths and the whole incision area is healing nicely. Boston seems like only yesterday, and ages ago. Both at the same time.

Henry and Wes had a heartwarming reunion on Friday when we got back. Henry had stayed at Andrew’s parents’ house on Thursday night since we didn’t get home until about 9:30pm. Andrew and I blitzed the house Friday morning, getting everything relatively unpacked and put away. Then we went and surprised Henry. The smiles were HUGE on both little faces. The rest of our first weekend back was nice, low-key, and ended with Wes’s first bike ride. He was noncommittal, but I think he’ll grow into it once he realizes that the bike can take him to cool places. Like to get ice cream.

Last Tuesday we saw Dr. Jim, our pediatrician. It was a fun visit, as usual, and reassuring to see him only five days after discharge. Wes had run a low fever from the Friday night after we got back through the following day and night, but it responded to Tylenol, never got very high, and he was acting normally. Still stressful for an obsessing mom, but Dr. Jim confirmed that everything seemed in order. Then Wednesday morning Wes’s first molar showed up. Although there are varying opinions on teething symptoms, for my own sanity molars got the blame for the fever.

Yesterday we saw Dr. Kamenir and it was good to see a familiar cardiology face. Wes had an EKG, and echo, and we had a nice office visit. Everything looks good and we got a drawing showing everything that’s going on in the heart now. It seems like blood flow to the left lung is improving (there will still be a follow-up scan in a couple months) and a small pocket of fluid on the heart hasn’t changed (a good thing). Wes will stay on aspirin for another five months due to the amount of work that was done on the heart, but we can wean down the Lasix over the next weeks so that he’s off it when we re-visit Dr. Kamenir in four weeks. This is exciting because while Wes does fine with the cherry-flavored aspirin, the Lasix is a twice-a-day battle that neither one of us enjoys.

Per Boston’s recommendation, Wes is wearing a Holter monitor for 24 hours to get a more in-depth look at his heart rhythm over the course of a normal day. It started yesterday around lunch time. Andrew’s mom expertly wrapped it against his leg so he hasn’t been bothered by it at all. And the wires are kept under wraps by jumpsuits and sleeper pjs. He’ll be done with it at lunch time today and then we’ll find out if any irregularities were recorded.

For now it’s a gorgeous spring day and Wes and Henry are having a great time at Andrew’s mom’s house.

Wes and Dad had a good final night at the hospital. Wes was a huge fan of night nurse Meg, beaming up at her when she did his midnight vitals. Emily arrived early at the hospital so Andrew could go back, get ready, and get everything Emily had packed up the night before from the apartment into the car. By 9:30am the car was packed, and Wes had his final chest x-ray, blood work drawn, and was happily taking his morning nap. Despite this early surge in activity, the rest of the day was a lot of waiting, as we had expected. Chest tube stitches eventually came out, Andrew went to the pharmacy to pick up the Aspirin and Lasix that Wes will continue to take at home, we took some walks, ate, took some more walks, and Wes napped again.

Eventually everything was in place, we had spoken to everyone we needed to, and Wes was discharged just after 4:00pm. We stopped for a leisurely dinner during which Wes ate a ridiculous amount of food (he ate fine in the hospital, but it seems that after a week even 14 month olds tire of hospital food eaten in a hospital room). It’s 8:30 and we are getting closer to home. It feels good. It’s also all still sinking in, everything that’s happened these past three weeks.

Our parade today did see a little rain, as is always the possibility. The rhythm guys popped in after they reviewed things for their final report and had noticed some missed beats over the past few days. This will be closely monitored with our local cardiologist but very much increases the likelihood of Wes requiring a pacemaker at some point, especially since having LTGA already placed him at a higher risk. The whole pacemaker discussion has been a roller coaster since the beginning. We’ve accepted the possibility from the get-go, it was just a bit of a downer to hear another change on discharge day.

We couldn’t be more proud of Wes during this journey. We had been concerned about how this experience would affect him and alter his spirit. It turns out that it was the opposite: it was his spirit that altered the experience. We know that his calm, playful, and cheerful disposition helped him, and us, every step of the way. He is the definition of resilient.

Thanks for following the story. We’ve used this as a way to keep a record for ourselves as much as a way to keep everyone up to date. The days all become such a blur – it will be nice to be able to recount specifics in the future. We’ll have a few more posts as he goes to follow up appointments, etc., but for the most part this is the happy ending we’ve been headed towards.

Tuesday was fairly uneventful. The big development was removal of the pacing wires. These wires were put in during surgery and connected to an external pacemaker to help his heart beat properly after surgery. As his heart rhythms became more consistent the pace maker was used less frequently. The pacing team left them in as long as they could, just in case, but because they were holding up the discharge echocardiogram it was decided they would be removed on Tuesday. Supposedly it can be slightly uncomfortable but Wes was a trooper and only got a little teary at the end. It was a little rainy and overcast on Tuesday so we didn’t get out to the courtyard but Wes did get plenty of stroller time. Emily’s friend Tiffany came for a visit in the afternoon, bringing a lot of cheer. That’s a benefit of being here longer than expected, as a visit last week wasn’t in the cards.

Wednesday morning I walked into the room to this beautiful site…

And we began an unexpectedly busy day. Emily went back to the apartment for a shower while Dad and Wes went to radiology for a chest X-ray. After the X-ray we dropped Wes off for his echo with Dr. Levine and walked back to the apartment for a late morning drink on the roof deck, which was just opened for the season on Monday.

After we retrieved a groggy Wes we had lunch in the courtyard, followed by lunch for Wes in his room and then a nap. During the nap we were called back down to radiology for a lung scan which will provide a baseline for how much blood is being sent to each lung from the repaired heart. As he grows, a section of pulmonary conduit that was installed during surgery will have to be re-sized and having a baseline now will inform that future procedure. He handled the lung scan like a champ and then after a little coaxing decide to continue his nap.

That should be it for today but you never really know around here. Tonight will be his last dose of Ativan which helps with pain and discomfort. As long as he tolerates that, and everything indicates that he will, we’ll be on our way home tomorrow…after blood work, another chest X-ray and his chest tube stitches being removed. Tomorrow morning we’ll clean out the apartment and pack up the car and, if the timing is good, head out in the afternoon. We can’t wait to see Henry, our home, and even our crazy cats.

Wes and Mom had his room to themselves last night and both slept well. His 8 East room is more private, quieter, and darker. A winning combination. We’ll be glad when the medications are reduced so as to not require 2am doses. This morning he got a new roommate who seems lovely for a 2 month old and comes with a nice family.

The electrical team didn’t want his wires pulled today, but we’re scheduled for them to come out tomorrow. Removing them can cause arrhythmia so they wait as long as they can. The echo will be Wednesday morning. Today they reduced his Ativan dosage to further wean him. We just found out that they have to do a 5 day gradual wean to avoid the risk of seizures (eek). So just based on the medication we are looking at hopefully a Thursday discharge.

We got outside again today in the courtyard and were thinking about how quickly an experience can change. Late last week our thoughts were, “Of course he still needs to be here and we are good with that.” We couldn’t imagine him being ready to head home. Only 48 hours later we are itching to bust out. Wes is much more active now, which is wonderful, but we’d like to get him back home and get all of us back to a normal routine. While we sat in the grass I commented that I wish he was strong enough to do what he did before surgery – cruise and crawl around, etc. Not because I think his recovery is lacking in any way (just the opposite!), I just wish him strength. Right now he still will topple over while sitting and not be able to right himself. And then, as if he understood me Wes put his hands on my legs, pulled himself up, and plopped himself into my lap. It was a shaky process but he did it himself. He sat there proudly in his glory, his hair blowing wildly in the wind.

Today, Sunday, two weeks after first arriving in Boston we had a nice slow day that still had its progress and milestones. Wes had a good night sleep in his new room in the cardiac recovery unit. It’s much quieter, darker and more comfortable. Wes was able to leave the floor in a stroller for a trip down to the lobby so Dad could get lunch.

Then, after a nice nap, Mom came back from home which brought out huge smiles. Then mom, dad and Wes took another stroller ride out to the courtyard garden. It was a beautiful spring day and Wes loved being outside.

After some playtime in the crib, sitting up of course, Wes had dinner and then went to sleep.

Tomorrow the pacing team will evaluate if the temporary pacing wires can be removed, which are the last of the tubes wires still on him. After the wires are removed they will schedule an echocardiogram and then we’ll be on the fast track for discharge. We hope to be home later his week, maybe even earlier. It’s very satisfying to know that we are on the home stretch, especially when the outcome has been so good. We couldn’t have done it without the support of all of you.

Meanwhile, back at home… Henry walks with James to Uma’s house.

and throws some shade…

Saturday was another big day in a string of big days. It started off shaky, literally, with a rough breakfast complicated by hints of medication withdrawal, which is expected and all part of the process. After breakfast Emily left for home to spend the night with Henry and get away from the hospital.

Then, right before lunch, Wes left the Cardiac ICU for the first time in 10 days to be transferred across the hall to the cardiac recovery unit. He met nurse Adam who got a big smile even though he wasn’t a pretty girl, ate some lunch and took a nice nap. The goal here is to adjust back to normal life, wean from medications and work towards discharge.