John, born 2011

When my son was born he seemed perfectly healthy, except he didn’t breathe like he should of. Any time we took him to his PCP, he kept telling us that he was fine and that the breathing would be normal in time, but it didn’t. When we went in for his two month check up, we were told by my fiancés aunt who worked in repiratory at the local hospital that there was something very wrong and to tell our PCP that she said there was something wrong.

 

So we did and after he listened to him, he ordered an x-ray and an echocardiogram. When he got the results he made an appointment at Arkansas Children’s Hospital a week later. Went to the appointment and they ordered all kinds of tests. After they were finished they ordered us straight up into the CICU so they could keep a closer eye on him. Three weeks later he had his first open heart and closed heart surgery. He was kept paralyzed and asleep for several weeks. We thought we were going to get to go home but he wasn’t able to breathe on his own so we stayed for his next open heart surgery about a month after the first set of surgeries. He still couldn’t breathe on his own. That’s when they realized his aorta was putting pressure on his airway. So the last surgery, they cut and moved his aorta to where it wasn’t collapsing his left lung. After he was cleared to be off the breathing tube, moved to the step down unit, and after a few more complications, we finally got to go home after four months of fear and wonder.

 

Now we have 5 to 10 years of waiting and wondering how long this surgery will keep him out of the hospital.

 

Story by John’s mom, Sarah – Oklahoma