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.