Double Aortic Arch Division {One Year Later}

One year ago today, after traveling thousands of miles to another state, we handed Apollo over to a new cardiothoracic surgeon. A surgeon who told us that he didn’t know what he would find when he opened Apollo’s chest because the notes from the original surgeon didn’t “jive” with Apollo’s anatomy. Dr. M told us he was confident he could free Apollo’s esophagus and hoped to repair the left subclavian artery that had been clamped by the first surgeon.

We were scared. We were angry. We were nervous. We were numb.

We had no choice but to put our trust in another doctor.

The surgery went went well. Aside from a bit of a scare when they first intubated him, there was no drama. The left subclavian artery was rerouted first. The diverticulum compressing his esophogus removed. The surgeon told us Apollo’s esophagus now “hung free”. He cleaned up some scar tissue and closed him up.

Apollo spent two nights in the intensive care unit.

Once again his pain was uncontrollable. His epidural didn’t work and the doctors couldn’t give him enough medicine to relieve his pain. He had his own pain team (thank you, Texas Children’s) who worked tirelessly to give Apollo some relief. They tried more drugs, new drugs, different drugs. They didn’t rest until he was feeling some sort of relief. They continued to check on him, even when he was in a normal room on the cardiac floor.

This was the last feeding of Bright Beginnings Soy Formula that Apollo would have for months. He developed chylothorax as a complication of the surgery and had to go on a completely fat-free diet. He vomited the new fat-free formula every single day he was in the hospital.

See that grenade looking thing hanging off of Apollo’s shirt? It was connected into a large tube, sunk inches into his chest and held in with several stitches. That fluid you see is chyle leaking from his injured lymphatic system (chylothorax). The container drained the fluid from his chest and was emptied every few hours.That bright-eyed smile is what Apollo looks like on morphine. I wish I were joking, but I’m not. You can also see the scars from the central line in his jugular vein. It was held in with three stitches.  Cardiac surgery isn’t for the faint of heart.

There are not adequate words to describe what it is like to see your  two-year-old son’s back look like this…

Chuck stayed in Houston until Apollo was out of the ICU and stable, then headed back home to our other children and back to work.

Tilly stayed in Texas to help me with Apollo. We had to buy our own meals on a different floor of the hospital and Apollo’s frequent vomiting (often on me) meant Tilly was doing laundry (on yet another floor) everyday. Sometimes twice a day.

We did our best to establish a daily routine in the hospital, including showers, getting dressed (Apollo felt better in his own clothes), tidying our room, and endless walks around the cardiac unit.

Apollo was released on day ten after surgery. We had to spend another week at the Ronald McDonald House before he was cleared for travel home.

One year later Apollo is much better. He is still tubefed but he has the capacity to eat anything now. He has even been cleared for dairy! He is no longer at risk of choking every time he eats. His breathing is better. His left subclavian artery that has been rerouted functions again. The blood pressure between his four limbs has evened out.

I follow the Ronald McDonald House Houston Facebook page and see pictures of kids we met who are still there.  A year later. And his friend KJ, pictured here in his wheelchair? He died last month. He was his parents only child.

Having a sick child has changed me forever. Never, ever, will I take my children’s health for granted.

Life is full of suffering. And there is nothing worse than watching your child bear the pain you would do anything to take away.