While the information on his surgery will be kept as current as possible at the bottom of this page, during his recovery and the immediate aftermath, the easiest way to keep up to date is to follow Julians' Surprise Heart Surgery Facebook Page (click the Heart below or the underlined link):
Julian has always had a bicuspid aortic valve. What this means is that instead of three flaps on his heart valve (preventing back flow into his heart) he only has two. Not really the biggest issue ever, and it sometimes NEVER requires surgery.
However, Julian has also developed an enlarged ventricle, and no one was able to explain why. When he went down for his most recent (and hopefully last) neurosurgery in September, his cardiology pre-op-assessment took a really long time. Turns out, that was because they noticed an aortic stenois.
See how much wider the "normal" aorta is? This means Juju's heart is working overtime to get blood to the lower half of his body (you know, where all his organs are) and it's causing some hypertension...enough that the surgeons can't wait until summer to do the surgery.
DAY OF SURGERY
Surgery was held on 12/19 at Doernbecher OHSU Children's Hospital in Portland. The morning of, Julian was all beautied up with Ironman's power-cell drawn on his chest:
Then, Benji and Pablo checked him into his pre-op stuff in the lobby while I finished my half day and drove, furiously, down from Vancouver to Portland.
I finally arrived, and got a chance to see his giggly self before he got all woozy and drugged up:
And then they let me carry him most of the way to the ER. He has gotten so big, I was actually in shock. Where did my little bread-loaf-sized baby go? Who is this giant child?
After we let them wheel him off, we headed down to the cafeteria and hung out with my brother and his roommate, and our friend Jessica (who was getting ready to take Rory for the duration of the hospital stay). Surgery was shorter than we were used to, but still seemed to drag on forever. They always do. Eventually, they called us out to the (nicest) PICU, and let us come see him:
He was out for quite a while, waking sporadically to give kisses or whine. The surgeon told us they had only had to clamp off his aorta for 17 minutes, but that it looked like the constricted part hadn't really grown since he was a baby. They were pretty sure they hadn't injured the nerve near his vocal folds, but couldn't promise his voice was going to be the same, after the surgery.
He came out with an arterial line and two IVs (which I am familiar with and understand) and a central line (that goes into his heart) as well as a sucking chest tube that drains the excess fluid from his thorax. These are new to me and I do not like them. He also had a chest Xray taken with a mobile machine, which was routine for them, but I thought was kind of cool.
He woke up cute, and charmed the whole ICU after Benji and Pablo went home for the night. Gosh, he's such a sweet looking kid.
I'm going to sleep.
POST-OP DAY 1
We didn't sleep too well, as they had to come in and change tubes, meds, dressings...every few minutes. Every time he called for me, I was up like a shot, too. Ah well, such is life in the PICU.
With a 6 week recovery period, this is going to be a very, very long winter.