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.

According to Caroline, the night nurse, Wes was agitated through the night but continues to make progress. We’re told that he was convinced that he was going to go home and doing everything he could to get up and go. Fortunately he was calmer and sleeping when we arrived this morning. He’s on a medication (code name “dex”) to further assist with reducing agitation and that, in combination with the Ativan, means he’s been able to rest comfortably today and continue to get needed rest. Tomorrow they plan on beginning to wean him from the morphine.

They let him practice being off the ventilator for a little in the night (something they call pressure support sprinting) and he did well. They thought they might be able to remove the breathing tube today but he was placed back on it this morning based on some extra fluid that they’re still trying to clear from his lungs and for which he’s on an antibiotic for the rest of the week. It should come out tomorrow (Wednesday) instead. Tomorrow they should also be able to remove the chest tubes.

Wes has been attended to during the days by Nurse Lily and Nurse Lizzie who is training under Lily. They’ve been with him since Saturday and have been great (Jen and Caroline, his recent night nurses, are also great but we don’t see them as much since we aren’t yet sleeping in the room)! Andrew and I end up with a lot of questions, only some of which are actually relevant, and Lily has been a really good sport with her patient answers and in pursuing answers she doesn’t know. We’re bummed that tomorrow is Lily’s day off (well-deserved!) and she’s going to miss all of Wes’s big steps. She and Lizzie have been amazing getting him to this point and we will always be grateful.

Wes worked off his own rhythms all day Sunday and through the night and wasn’t on the pacemaker. This morning Dr. Emani started using it again for the atria and Wes seemed to respond well to that. There’s a lot of switching back and forth for various reasons and I can’t always keep them straight.

He came off the paralytic around 4pm Sunday and was having some involuntary muscle spasms as expected by the time we left at 7:30pm. He looked like he was trying to dance as they started in his shoulders, chest, and belly. When we came this morning his eyes were fluttering open as he was being examined and you could see a hint of deliberate movement working below the rest of the shimmies and jolts. During the day it progressed to definite, deliberate movements. Five days after sending him away with the nurses before surgery we’re seeing visible changes and progress, not just the internal progress that’s followed in numbers and rates and lab results. This new stage also brings new challenges, though, since as they reduce the sedation we’ve started seeing his discontent for the first time. Although pain is carefully monitored, there is still discomfort, agitation, and general grumpiness as any kid would experience. He tries to make a sad face but he’s still a little too doped up for it and the breathing tube is still in. He’s also fighting sleep pretty hard, so now there’s some Ativan. He’s off and on various other medications as they try to find a happy middle ground for him, but in general is doing great. The chest tubes will come out soon and once the breathing tube comes out in the next day or so we’ll get to hold him.

It’s been peaceful these past days, but for once it will be nice to have an angry child in my arms. A lot has happened in the last 24 hours and it will continue to progress quickly from here.

This morning Henry dug through his Easter basket and hunted eggs in the apartment before we went to a great brunch at the Eastern Standard. Everyone headed over to the hospital to wish Wes a Happy Easter before Uma and Poppy hit the road, followed by Andrew and Henry. Emily and Mimi are hanging out with Wes today, then tomorrow Mimi will head to Scotia and Andrew will be back in Boston by dinner time. Don’t worry – we can’t really keep it straight either.

Wes has continued to do well without the cooling blanket. Last night they tried removing the paralytic but after 4 hours his lab results indicated that he wasn’t quite ready yet. They’ve just removed it again late this afternoon and we’ll see how he responds.

Wes has continued to confuse everyone with his heart rhythms. He still is being paced, but they kept having to push the rate higher otherwise his natural rhythm was competing with the pacer, but he couldn’t be left with just his own rhythm because the upper and lower chambers are out of sync. Silly Wes. Fortunately his body hasn’t shown any signs of distress typically associated with such high heart rates (he’s been in the 160s and 170s – this kid is accustomed to racing to keep up with the older boys).

Everyone arrived safely on Friday and visited Wes (not Henry, but luckily at 3 he’s young enough to not be worried about Wes staying in the hospital with doctors). It’s nice to see family and it’s wonderful to see Henry for the first time since Sunday.

Yesterday we said good morning to Wes then took Henry out to lunch and to the aquarium. We had been looking forward to this as a bright spot ever since we knew Wes would be having surgery in Boston, and we’re glad to have followed through with it. He really enjoyed the large tank and found it hilarious when the fish and turtles would swim by his face. Those manta rays can really sneak up and surprise you! It took three subway trains to get to the aquarium and three to get back as he discussed at length with our lunch waitress (coincidentally, “Three is how old I am!”). He was so much fun, thoroughly tired out by the day, and fell happily asleep in the “spare bedroom,” aka the walk-in closet. We have no shame. Uma and Poppy kept Wes company during the day while Mimi helped out with some stuff around the apartment and made Wes a great photo board for his room before visiting him.

Progress yesterday included taking Wes off of two of the medications for his heart, which he didn’t seem to notice or care about. It’s thought that although those meds were necessary to help the heart immediately following surgery, they are less critical now and their removal might help with the rhythm stuff. And they started him on a new med specifically meant to address rhythm issues. Last night before we left they turned off the cooling blanket as the next step and we’ll see how his temperature does throughout the day.

A little bit about Dr. Sitaram Emani, the surgeon who operated on Wes. First a glamor shot found online…

He’s a very pleasant, somewhat soft-spoken man who is obviously well thought of in the hospital. Interestingly, Wes’ Pediatrician, Dr. Jim Saperstone knows Dr. Emani because he operated on Dr. Jim’s brother several years ago. His brother, who is in his late 60’s, was born with a congenital heart defect which normal cardiac surgeons typically do not operate on, hence the involvement of Dr. Emani.

Dr. Emani attended Northwestern, then Harvard Medical School then a residency at Duke University. My brother Josh, a rabid Syracuse fan, reluctantly admitted that his feelings toward Duke may have softened slightly after hearing this news. I do know who I will be rooting for in the final four games tomorrow. Go Duke!

A team of cardiac fellows that specialized in heart pacing stopped by this morning.
After fiddling with the external pacemaker for a while and making small adjustments, the attending in charge of the group turned to us and said ‘if I had to make a bet I would say he won’t need a pacemaker’. They seem pleased with the conductivity around his heart, he just needs some time to figure it out. We are fully prepared for the need for a pacemaker, but his statement provided a nice little boost to the morning.

Emily and I both commented that if anyone won’t need a pacemaker it will be Wes. He didn’t need surgery when he was born, when the doctors thought he most likely would. He didn’t need medication or a preliminary procedure and he never turned blue or had shortness of breathing, which constantly baffled his cardiologist. As mentioned yesterday, Wes is a fighter and he’s going to get through this procedure his way.

Yesterday and last night were uneventful, which is always a good thing in the cardiac ICU. We kept Wes company, venturing out for lunch and then home for dinner and sleep. He stayed just as he should and is still sedated and paralyzed (intentionally), with a breathing tube. He’s on a cooling blanket because his temperature creeps up when they take him off. It’s not a fever or a concern, the doctors are just very particular in what they like to see (as they should be!). He is also still being paced for now while his heart is getting used to its new configuration and is healing from surgery. Green Sheep and Penguin are snuggling with him.

Dr. Emani stopped by at the end of the day yesterday. It sounds like everything Wes is doing is fine.

We’ll stay the course and Wes will do his thing. It’s actually kind of peaceful having him “asleep” for now. It’s the quietest we’ll ever see this kid since he’s normally a firecracker. And to think that his energy levels are supposed to increase after surgery…

Meanwhile, this 3 foot tall party is on his way. Look out, Boston.