OUR CONGENITAL HEART DEFECT JOURNEY, PART 2
If you missed Part 1 of our CHD Journey, be sure to check it out here.
Welcome to Part 2 of our CHD Journey! In Part 1, we left off with a follow up appointment with Pulmonology in October, when his symptoms typically presented themselves each year. Over the warm summer months, his wheezy breathing symptoms had cleared up, his O2 was in normal range and he appeared to be a healthy little boy. Around the end of September, beginning of October though, the wheezy breathing came back with a vengeance. It was the worst it had been, so I was grateful we already had an appointment with the Children’s Hospital Pulmonology on the books. I should also mention that I was 8 months pregnant with our second boy, Korben.
Sometimes sunglasses make the scary things not so scary. So with a giant pregnant belly and Mickey sunglasses, we walked ourselves into the appointment that I was dreading. By this point, I knew something bigger was going on, but I anticipated that this appointment would be similar to the others…asthma.
We met with one of the doctors and to be honest, I was not overly impressed with her. Halfway through the appointment, I remember thinking, “This is a waste of time, she doesn’t want to try anything new or look any further.” I was discouraged and desperate. I don’t remember much of what she said, I just remember silently begging the Lord to give her one idea that we hadn’t already tried. We ended the appointment with a new breathing treatment and a follow up appointment in 2 months.
We had left the exam room and were almost to the lobby doors, when the doctor briskly walked down the hall and said, “I just thought of this, when was the last time he had an x-ray of his airway and chest?” It had been at least a year, so she asked if we had time to do that real quick before we left and they would call us with the results after it had been read by the radiologist.
A few hours later, we got the call that changed everything. When the doctor called and said the words, “the x-ray showed something,” there was nothing I could do but cry. FINALLY. We finally had something! The doctor told us that there was an indention on his esophagus and trachea that looked abnormal. This typically indicated a Right Aortic Arch (a normal Aortic Arch faces left), but they would need to do a CT Scan and Bronchoscopy to be sure. They were sending the info to scheduling.
It feels weird to say that I felt relief in that moment. I mean something was wrong with my son. Yet, what I felt was complete a total relief that after pushing, questioning, asking for second opinions and third opinions, FINALLY, there was a reason (or at least the beginnings of a reason) for his symptoms.
Remember how I said I was 8 months pregnant at his Pulmonology appointment in October? Well, as it turned out, the soonest appointment for a CT Scan and Bronchoscopy was November 22. My induction was scheduled for November 25.
Sean took Jack to the CT Scan and Bronchoscopy. We learned that sedation makes Jack VERY hyper! You would have never known he had a procedure, he was bouncing off the walls when he came home. The procedure was late on a Friday afternoon, so we knew we probably wouldn’t get results until the beginning of the week, so we settled into our last weekend as a family of three.
On Monday, November 25 we welcomed Korben to our family. We were soaking up everything about being a family of 4, but there was still those looming test results in the back of our minds. I actually saw the test results come in online before I received a phone call. The results confirmed that Jack had a Right Aortic Arch, but it also showed a Vascular Ring. This is where the artery creates a ring around the esophagus and trachea, which can either be a partial ring or a complete ring. We would be referred to the Pediatric Cardiology at the Children’s Hospital in Denver, which was set for the end of December.
We met our wonderful pediatric cardiovascular surgeon who was able to really help us understand the official diagnosis: Right Aortic Arch with Vascular Ring and Left Subclavian Artery. What in the world does that mean? “The left subclavian artery abnormally originates from the descending aorta and courses behind the esophagus and the ligamentum connects the left pulmonary artery and the descending aorta together. This types also forms a complete circle around the esophagus and trachea.” In laymen’s terms, the aorta had created a ring around the esophagus and trachea, which constricts air flow and can cause eating/choking issues.
So what did all of this mean for us?
Jack would need surgery to correct this issue.
Once the surgery was completed and his body had healed, he should be able to live a normal life, participate in sports, etc.
While Jack definitely needed the surgery, it was not life threatening. Our surgeon agreed with us that we should wait until after cold and flu season, in order to limit the risk of infection and recommended we have the surgery in April/May 2020.
Mama, I want to encourage you today. If there’s something going on with your kiddo and you aren’t getting the answers you need, keep pushing, keep asking the questions, and get second opinions. Sometimes, it’s as simple as asking the right questions to the right person. It may take you 27 people to get to that person, but then it all clicks. You know your babies better than anyone and I truly believe that God gives Moms a special kind of discernment when it comes to our kids, trust it and lean into it to get the answers that you need.
I’ll be sharing my final post, Part 3 on Thursday!