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.

We promised a final update last night but we couldn’t do it justice after getting back at 9:30 and crawling immediately into bed. Out lovely webmaster, Sarah, posted a quick note so everyone knew we were all ok.

After the initial excitement of the our last update from the nurse liaison around 4:30 (mentioned in our last post) and then not soon after a visit from Dr. Emani we were recharged with the idea of seeing Wes soon. We grabbed dinner and a celebratory drink and moved upstairs to the Cardiac ICU waiting area. And then we waited, and waited, and waited. Around 9:00, 14 hours after first walking into the hospital, we were finally brought in to see Wes and it was all worth it. He looked amazing. He was (and still is) hooked up to a countless number of tubes and wires and sensors, but he looks peaceful and … surprisingly really big for his crib. I don’t know why I was expecting him to look different but I was so relieved that it was unmistakably Wes. His beautiful blond hair and that signature pale skin.

After such a long, emotional day and the overwhelming relief of being able to finally see him, mixed with my dislike of blood, I became a little lightheaded but was saved by Wes’s nurse Laura who brought me a ginger ale. We talked with the nurse a little, said our goodnights to Wes and walked back to our apartment.

After a good night ‘s sleep we walked back to the hospital around 8:00 this morning. We were greeted by Wes’s day nurse, Shawna, and given the good news that he had a great night. He’s still figuring out his heart pacing and at one point became dis-synchronous which means his chambers weren’t moving at the same time. It was most likely because of normal swelling. He was brought under control by an external pacemaker. There is a normal and expected ‘dip’ in stats and levels about 12 hours after such a large surgery that includes bypass, which we are in the middle of right now. The positive sign is that there is conductivity around his heart which doesn’t rule out the possibility of needing a permanent pacemaker, but it’s a good sign that there is some hope he won’t.

My dad told me a few months back, after watching all four of his grandsons for a few hours, that he could tell Wes was a fighter. He was the youngest and by far the smallest and he held his own with his older brother and two older cousins. I think anyone whose comfort object is a toy hammer, and that’s only because his mean parents decided his toy golf club was a little unwieldy for the hospital, has what it takes to come out of this situation with a big smile and full of pep (you know the other word) and vinegar.

One of the cardiologists came in to review his information. He’s from New Jersey (commented on Emily’s Long Beach Island t-shirt) and his name is Henry so he’s good in our book.

We’re now just relaxing in his room, reading him stories and trying to keep ourselves occupied.

Tomorrow our moms will be here around lunch followed by my dad and Henry later in the day. It will be so nice to see Henry, we can’t wait to see his big smile and give him a huge hug.

Sarah here… I just heard from Andrew and Emily who asked me to send a quick note. They’re back at the apartment and are getting some rest after what I can only imagine was an unbelievably long and difficult day.

Much to everyone’s relief (but not surprise) Wes is resting comfortably and doing great!

More updates to come tomorrow…

It’s 4:30 and Wes is still in surgery as expected. We were told 6-8 hours going in so things seem to be right on track. Doris, the nurse liaison has given us updates every hour or so, just as she said she would. The repairs are moving along but we don’t know much else. During the surgery Wes is on a heart/lung bypass machine so they can paralyze his heart to work on it, and we found out they cool his body down to around 55 degrees to reduce oxygen consumption and increase the safety of long surgery. As they wrap up they slowly raise his temperature back to normal and at some point his heart will begin to beat again. They will also do another echocardiogram to ensure the repairs are working as planned. When he is in the ICU they will come get us so we can see him but he will be sedated. One parent can stay in the room overnight but the nurses have suggested, since he’s sedated anyway, that we should take the opportunity to get some sleep away from the hospital.

In the meantime, enjoy this picture of Wes last night at dinner in our apartment. Obviously he was deeply affected by the anesthesia from his MRI and had almost no appetite…

The big day, surgery day, started off early. We had to be at the hospital by 7:00 so we left for the morning walk to the hospital at 6:30. We were checked in and after a short wait Nurse Maureen took us back to the pre-op holding area. This area was very busy with patients, families and nurses. Around 8:00 another wave of nurses and doctors arrived to meet their patients. Dr. Al, the anesthesiologist from yesterday’s MRI stopped by to say hi to Wes which meant he got a big smile. Another anesthesiologist came in to give him the oral sedative. We held and rocked him, Emily sang “Happy Birthday” per Henry’s suggestion before we left home, we gave him lots of kisses, and they took him in at 8:30.

We went back to the waiting area, checked in with the nurse liaison and then Dr. Emani stopped by. After reviewing the MRI, based on the aorta’s location, he’s decided to pursue the Nikaidoh procedure which will involve moving (translocating) the aorta. Dr. Emani also confirmed that a pacemaker will likely be needed, which we had been anticipating since our first meeting with him last August.

We grabbed breakfast at Brueggers before coming back to start the long wait. We will be updated every 90 minutes or as necessary. We’ll have multiple updates today so please check back.

As I was writing this update the nurse liaison came by to tell us the surgery officially began at 9:45.

Thank you all for following and for all of the kind thoughts and well wishes.