Two years ago today, Apollo had his first double aortic arch division at Seattle Children’s Hospital. We were so naive and full of hope. He was diagnosed with a double aortic arch on January 18, 2012 through an MRI. We were told the surgery would fix both his breathing and his eating issues. Once the surgery was done, his trachea and esophagus would be freed up. He would no longer be strangled by his heart. We were told his eating issues would be resolved right away, but it might take up to a year for his stridor (noisy breathing) to resolve.

Two weeks post-surgery we were told his heart was “repaired”. Apollo would see the cardiologist at six months post-op, and as long as no new issues arose, he would be finished.

{are you laughing yet?}

What no one knew, what we wouldn’t know until summer when I began making phone calls and asking questions, was that the surgeon, for some unknown reason, placed a metal clip on Apollo’s left subclavian artery. This clip cut off the supply to his left arm completely. While he recovered from surgery, his body was busy making collateral arteries to supply his arm with blood…by the time the doctors discovered this (and only after my continual  questions) he was supplying his arm and neck with blood directly from his head. And brain.

But none of us knew this. We brought Apollo home for the very long healing process. Apollo was so traumatized by the surgery, he would no longer sleep on his own. Words such as “pajamas”, “bed time” and “brush your teeth” became triggers for Apollo. He would immediately begin to cry; and if he felt well-enough, run away from us.

For the first time we were told, “Apollo may not be able to keep up with his peers” as he gets older. Two years later, I can tell you deals with fatigue and tiredness almost daily.

Six weeks post surgery I called the hospital close tears. Apollo’s breathing was so bad at night. The noises he was emitting sounded just like the noise a balloon makes when you stretch the top and slowly let air out. You can click here to listen. I recorded it to show the doctors just exactly what was going on. He was seen by a pulmonologist the next day (a Friday) and admitted Monday morning for a marathon of tests. 

In the end, he had: two bronchoscopies (flexible and rigid), a CT scan, a swallow study, and an Upper GI. We were told he had another vessel from his heart pushing on his esophagus. A cardiologist came in and told us while it could technically be repaired, it was too risky and in Apollo’s particular case, wasn’t likely to work anyway. When the GI doctor came in to consult with us, I immediately began to thank him (I was so relieved to finally know the root of his feeding issues- issues many of his doctors didn’t even seem to believe really existed). The GI doc stopped me mid-sentence and said, “I’m sorry, but this isn’t good news. I can’t do anything to fix this”. His tone was sobering.

Apollo had a g-tube placed one week later.  His GI doc knocked a few kids down on the list to make Apollo a priority. Because of the compression in his esophagus, an NG tube (placed in his nose) wasn’t an option for him.

The recovery from the g-tube placement was long, slow and drama-filled. Probably because his body was still recovering from  heart surgery (seven weeks earlier) and was under-nourished.

When he was finally recovered, I called down to Children’s innocently to ask what specific artery was compressing his esophagus. I was trying to do some independent research, and wasn’t completely clear on what the issue was. By this time, I had requested Apollo’s medical records and read every single word. I talked to a nurse in cardiology who said I needed to speak to the doctor who said it was “complicated” and we needed to talk in person.

It was in September that we learned losing his left subclavian artery was considered a “complication” of the surgery. So was the piece of artery pressing into his esophagus (called a diverticulum). By this time, both surgeons who operated on Apollo had moved out-of-state and we never did learn why his aortic arch was cut in such an unusual spot and why the clip was placed on his left subclavian artery (completely unheard of for this type of surgery).  We were given the option to: do nothing (despite his risk of choking and developing subclavian steel syndrome), have the surgery redone at Seattle Children’s Hospital (where no one had ever redone a double aortic arch division in the history of the hospital) or find a surgeon out-of-state to do the repair. Chuck and I never questioned which choice was the right one. Of course, this needed to be repaired. And according to his pulmonologist, the sooner the better.

I spent  countless hours researching online and calling hospitals until I found a surgeon in Texas who had done double aortic arch re-operations. We flew down to Texas mid-October of 2012 and he had his second double aortic arch division October 30, 2012.

So here we are, two years later.

I have had to fight tooth and nail every step of the way. First, convincing doctors something was wrong, begging for the MRI that diagnosed him, insisting something was still wrong with his eating and breathing. Finding a surgeon myself to re-do the operation. It has been an uphill battle that has consumed me (and our family) at times.

Chuck and I often wryly joke that Apollo has a “kick me” sign on his back when it comes to doctors. It has been a battle and journey we never could have imagined.

So how is he now,  two years later?

His stridor is gone, his esophagus has been “freed”, his left subclavian artery has been rerouted and repaired. He is sleeping better since he began an iron supplement in December (though he still sleeps with us or a sibling). He still has his g-tube, but can eat. He struggles with fatigue and gets short of breath when he’s active.

In short, he’s better than he’s ever been. And we are still fighting to get him the care he needs.