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.

Wes slept well overnight and woke up cheerful. His fan club members all peeked in while he was enjoying his breakfast of pancakes, sausage, pear, and milk. Everyone got big smiles. Wes got his feeding tube taken out and they’ve also removed the nose oxygen thing. Andrew, Emily, and Josh got breakfast while Wes had a morning nap. Josh left for home, Emily went back to the apartment for a little, and Wes hung out with Andrew.

Lunch was chicken fingers, green beans, and Pediasure, eaten in his chariot by the window. It turns out the hospital has what they call “go carts” but what in actuality more resemble wheelchairs from the early 20th century, or perhaps an emperor’s chariot. This was all very exhausting, so Wes took a nap and Andrew and Emily headed out again to get Andrew stuff to stay the night in the hospital and grab a cocktail. It turns out Wes was just trying to lose the embarrassing parents so he could have some alone time with lovely Shauna.

We’ve just returned at 4:30 and Shauna informed us that he woke up about 20 minutes in, they’ve had a ton of fun playing, and he just fell asleep again about 10 minutes ago. We’ll wake him up in a bit to go on a parade in his chariot through the halls before dinner.

We’re guessing that Wes will be moved out of the cardiac ICU (the 8 South referenced in the title) tomorrow, much to the disappointment of the nurses. His rhythm stuff is the only thing keeping him here and that seems to be nearly sorted out, or at least reliable. Tomorrow Emily will head home for an overnight stay to give Henry some snuggles. She’ll return on Sunday for the final hospital stretch.

On another note, we’d like to give a shout out to Dr. Kamenir, Wes’s Albany cardiologist. He hasn’t gotten a lot of play time in this part of Wes’s story but he’s the one who got the ball rolling and referred us to Boston. He’s taken great care of Wes over the past year and will continue to do so for years to come. I’ll never forget that before Wes was born he was the only doctor who didn’t expect surgery to be necessary before Wes came home, and he was right. Wes can’t wait for a post-surgery follow up visit.

Overnight Wes did fine. Slept, didn’t sleep, stayed calm either way. Nurse Brittany was very nice and will be back again tonight. Today Nurse Shauna is back and Wes decided to take things up a notch since yesterday’s progress. He was very happy when he woke up with some rainy day-brightening smiles. His chest x-ray looks better than yesterday. His arterial line came out of his left wrist this morning, followed by both of his chest tubes. Some initial grumpiness and pouting after the chest tube removal was alleviated by some scrambled eggs, toast, and banana for lunch – the first solid food since dinner last Tuesday, the night before surgery.

After lunch was a giant poop which made Shauna cheer and clap. He will be weaned off of “dex” by the end of today, and I think they’ll be stopping his heparin, too. He is still being paced, although this morning they found he had converted from a junctional rhythm to a sinus rhythm, which is the change they said could still happen and even further lessen the likelihood of the pacemaker (it means that the atria are beating first, as they should be). As of 4:30 he had changed back to junctional, but the fact that he got to sinus rhythm at all is fantastic.

Henry is doing great at home, after entertaining Mimi for several days he was handed off to Rob and Lorraine to give them a taste of ‘A day in the life of Henry’.

Josh came to Boston for a visit and received a welcoming smile from Wes.

One week after going into surgery Wes continues to make great progress. Today his breathing tube was removed which created an angry Wes with a tiny, gravely cry. He calmed down after his beloved football bink was finally returned to him and Emily sang him some songs. Now he’s resting comfortably. The nurse, Shauna, also removed an IV from his right arm, the arterial line in his left arm is next. The chest tubes are still in, but should be coming out tomorrow and that should further increase his comfort. He’s thinner since he’s only had liquid nutrition and they’re pushing out as much fluid as they can. Soon, though, he’ll be able to start trying to eat.

So far, as different tubes and wires have been removed or medications changed he has done a great job of tolerating each new situation, which is a great sign.

Because the breathing tube is out, our role as active comfort for him will increase, so tonight is the first night one of us will stay in the hospital room. There is a cushioned bench near the window that turns into a bed with the addition of bedding and a pillow and a curtain for privacy. He will remain in the cardiac ICU until he is off the external pacemaker.

Dr. Jim Saperstone, Wes’s pediatrician, stopped by for a quick visit. He was in Boston visiting family and wanted to see how things were going. It was nice to see him, if only for a few minutes. He was very impressed with Wes’s recovery. In a way that only Dr. Jim can, he summed up this whole experience with the simple statement, “Isn’t this place f**king amazing!?” and it truly is.

After a nice rest Wes woke up around 3:30 but was not nearly as agitated. After he looked around for a while he turned to Emily and gave her a beautiful smile. It was so nice to see that smile. It was what we’ve been waiting a week for and we didn’t even know it.

Wes was born with three major heart defects that in their own way worked together to keep him going for 13 months before it was finally time for surgery. If any one of the three defects were not present at birth he would have needed surgery immediately before the final repair could be made later.

Wes had a large hole (VSD) between his ventricles (black circle on the picture). He also had a narrowing of the pulmonary artery at the valve and the main defect was that his ventricles were reversed. This meant the ‘stronger’ ventricle that normally pumps to the body was pumping to the lungs and the ventricle that normally pumps to the lungs was pumping to the body. If this was left as-is the ventricle pumping to the body would eventually wear out because it was not designed to work that hard. His lungs never received too much blood because of the narrowed pulmonary artery valve and his body received adequate blood flow because the VSD allowed the pressure from both ventricles to send blood out.

Surgery became necessary when his blood oxygen level dropped into the mid-eighties (normal is 100%) due to his growth and continued pulmonary obstruction in combination with the VSD.

Dr. Emani performed what is a called a double switch using a Nikaidoh procedure. They closed the VSD, relatively minor compared to everything else that had to be done. They then removed the section of narrowed pulmonary artery with its bad valve and installed a new section and valve from a donor and connected it to the correct ventricle. He then moved the aorta and connected it to the spot where the pulmonary artery used to be so the ventricles could now pump to where they were supposed to. He then had to create a series of baffles and conduits to get the blood to through the atria to the correct ventricles (hence the ‘double’ switch). It was a massive reworking of the entire heart but it now functions as it should and is performing beautifully. At some point the donor conduit/valve will have to be up-sized as the heart grows but that procedure can be done through a catheter and is not considered major surgery.

The main electrical system of Wes’s heart was very close to where the aorta was detached for relocation so Dr. Emani warned us that the conductivity may be interrupted. If the conductivity did not return they would have to install a pacemaker, but so far that does not seem to be necessary.

As you can see from my brief overview of the procedure, it was very a complex situation but ultimately a complete success. Thank you all for your continued support and well wishes.