We started our morning at Boston Children’s Hospital by meeting with a cardiac surgical fellow who described in horrifying detail exactly what they will do during Evan’s open heart surgery to repair his cardiac defects. Being the ever-curious person that I am, I’d done a bit of Googling prior to our pre-op appointment, but nothing prepared me for the words we were hearing.
Despite not having eaten since dinner the night before, Evan seemed blissfully unaware of the gravity of our visit. He stayed in relatively great spirits even while having his blood drawn, being poked, and listening to his moms and various members of his surgical team discuss logistics and risks. He sat still during his chest x-rays and EKG, and played peek-a-boo with the anesthesiologist.
We made the rounds with other parents and their heart kids. Allison, an adorable 3-year-old from New York is scheduled for the same surgery as Evan. Savannah, who’d had a 12-hour surgery at 6-days old is back for a second surgery. We traded stories as we waited to meet with doctors or move to the next pre-op station. We said goodbyes as we waited for Evan’s echo. He was the only one who needed to be sedated, so we had a longer morning than everyone else.
It was so hard. So hard to look at our sweet little boy giggling as he hid under hospital blankets while waiting to be sedated for his echocardiogram. He gulped down the sedative and ten minutes later he was snoring in Kendra’s arms, his hair tousled and his lovey securely gripped in his mouth. He stayed that way as the nurse and tech attached leads to his body and began the hour-long procedure.
Prior to today, Evan’s had several echocardiograms, but not since he was a few days old has he been still enough to get thorough images of his heart; which is why today they did a sedated echo – the cardiologists needed a clear picture of what his heart looks like these days, the current size of his VSD, and the progression of his double-chambered right ventricle.
During his echo, Kendra and I toured the cardiac intensive care unit, and cardiac step-down wing. This was the hardest part of the visit – seeing little ones hooked up to all sorts of machines and knowing that our son would be one of those kids in just 24 hours. At this point, we broke. We had to get out of the hospital just for a bit to clear our heads and steel ourselves so we could best take care of Evan.
Just minutes after we left, I got a call from Evan’s nurse – he had woken up earlier than expected. We rushed back to the hospital. He’d reacted to the sedative with explosive poops, but was otherwise fine. Still groggy, he snuggled into my arms and sipped water. Then, in true Evan fashion, he saw my pizza I’d grabbed for lunch and asked for a bite. Ten minutes later he’d plowed through an apple squeeze pack and a banana. So much for needing a few hours to wake up and start eating solids again…
We returned to the cardiac pre-op waiting room for our last meeting of the day with our cardiology fellow, Chris, and Dr. Doom. (He’s a sweet guy, but always tells us the worst case scenario, hence the nickname.) After a ten-minute wait, they came out smiling, and guided us into one of the examining rooms.
So, we are glad you got the tour, and had a chance to see what it will be like if Evan has his open-heart surgery, but… that’s not going to be tomorrow.
Wait. What? I looked at Kendra. Two weeks ago, after Dr. Doom had broken the news that Evan needed surgery, and then left the room, Chris told me she didn’t think Evan’s heart was the root of his slow weight gain. I wanted to believe her, but I had two cardiologists telling me otherwise, and it seemed futile to hang on to hope when facing open heart surgery. As the week went on, and all Evan’s blood work came back normal, hope slipped further to the back of my mind.
But in the end, our cardiac fellow was right – after looking at the images from the sedated echo, the cardiology team agreed with her! Yes, Evan has three cardiac defects, but no, his heart is not having trouble right now. His VSD is relatively small compared to when he was born, and the muscle bands in his right ventricle are more like little nubs rather than bands. The only issue they are concerned about is a possible blood vessel wrapped around his right aortic arch, but that would not cause his weight to plateau.
Kendra cried. I cried. Switching gears from open-heart surgery to a gastrointestinal consult was a lot to digest (Yes, pun intended.) This doesn’t mean Evan is out of the woods. Open heart surgery is not ruled out – but for now, his heart is still defying the odds.
So back we go to the pediatrician – and instead of spending New Year’s in the cardiac ICU, we will be collecting samples of Evan’s poop. I will take that any day.