JACK’S HEART STORY, PART 2
If you missed Part 1 of our CHD Journey, be sure to check it out here.
In Part 1, we left off with a possible diagnosis.
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.
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 and total relief, that after pushing, questioning, and asking for second and third opinions that 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. I was scheduled for an induction on November 25.
Sean took Jack to the CT Scan and Bronchoscopy. Since the procedure was late on a Friday afternoon 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. Even though, we were soaking up everything about being a family of 4, the anticipation of Jack’s test results still loomed 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. 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.”
That’s a whole lot of words to basically say that his aorta was facing the wrong way and had created a ring, encapsulating his trachea and esophagus, essentially restricting airflow. This is why Jack had experienced the “wheezy breathing” every year when it would get cold. His trachea was already inflamed from being constricted. Combine that with the frigid Colorado air and increase in elevation and you get a kid who sounds like he has croup from about October through March/April. That is why his symptoms never really let up during that time period each year.
So what did all of this mean for us?
Jack would need open heart 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.
Now our goal, was to keep Jack as healthy as possible until his surgery and to begin preparing him mentally and emotionally for what was going to happen. If you know Jack, he is VERY inquisitive and he had been with us in our appointments with the Pediatric Cardiovascular Surgeon so naturally he started asking us questions. We kept the conversation really basic and told him that his heart had an owie and the doctor was going to fix it.
Around the beginning of March, we started reading some books that the Child Life Specialist had recommended to help him become informed and comfortable about the surgery. I’ll link the books that were recommended to us at the end of the post.
We decided for Spring Break/Jack’s Birthday that year, that we were going to go to Texas and visit family. So, on March 11, 2020 we packed up the car and hit the road.
I know what you are thinking….the world changed in March 2020. You would be correct.
We drove to Texas on March 11, thinking, “Oh wow, look what’s happening in Seattle! This is nuts. It’ll pass over and calm down in a few days.” On our road trip there, everything was normal. Gas stations and restaurants were open, there were no restrictions, but there was lots of chatter. As we made our way back home to Colorado on March 20, we knew we were living in a VERY VERY different time. Coronavirus was spreading rapidly, restaurants were closed for indoor dining, schools were closing and you guessed it, hospitals were cancelling everything that wasn’t catastrophically life threatening or directly related to Covid-19.
We were now living in a world where words like “social distancing” and “toilet paper hoarding” were part of daily vocabulary. Then I received the phone call that I had been dreading, “all non-essential surgeries were being cancelled until at least June.”
Just as everything else, Jack’s preschool closed for the remainder of the school year. This major change combined with the heart surgery that we had been preparing him for, really had an effect on him mentally and emotionally.
In a matter of a few weeks, my very bubbly, excited, encouraging 4 year old, became anxious to the point of having panic attacks, and was angry and frustrated. I didn’t blame him, we all felt those big feelings in some way or another, but as a Mom, my heart was so broken for him. It wasn’t something I could fix. We had many days where we sat together and cried, because that was really all we could do.
At the beginning of May, I called the Pediatric Cardiovascular Surgery Clinic and was able to find out that the tentative plan was to begin scheduling “urgent” surgeries at the beginning of June and we qualified as an “urgent” surgery. We were still at the beginning of the pandemic and things were changing on a daily basis, so they wouldn’t have an exact date until the end of the month.
At the beginning of June, the hospital called and said surgery was scheduled for June 19! Again, you’d think I’d have a different reaction, but with the world going insane because of Covid and so much unknown, I was relieved to finally have a surgery date. So we marked it on the calendar, started reading our books again, had lots and lots of conversations about what was going to happen and prayed that the Lord would protect Jack from all anxiousness.
His surgery was at the Children’s Hospital in Denver and would take between 4 and 6 hours. The whole prep team was just wonderful. The Child Life Specialist met us in the pre-surgery area and played with Jack, the doctor came in and walked us through the surgery and told us the specific parts that would be the most difficult. We were able to stay with Jack until it was time to take him back. I was super worried that he would get anxious going back to the operating room by himself, but they gave him a little “relaxation cocktail” about 10 minutes before it was time and “relaxed” is an understatement, I don’t think he knew what planet he was on. The nurse asked if he wanted to walk back and he just held up his arms and said, “carry me.”
There were two tricky/risky parts of the surgery that the doctor shared with us. The first was seeing how tight the vascular ring had become around the trachea and esophagus to determine if further intervention would need to be made to repair the trachea or esophagus. The second was the left subclavian artery because it would need to be relocated and was providing a majority of the blood flow to his left arm.
We knew the surgery was the best option for Jack long-term. We knew that we had a wonderful surgeon and more than anything, we knew that we served a God who had already gone before us to prepare the way for this surgery. So as they wheeled the one that made me a Mama back to the operating room, I fully and completely turned him over to the Lord.
I’ll be sharing Part 3 of our CHD story next week to conclude Congenital Heart Defect Awareness week.
Below I’m linking several books that we read with Jack about staying in the hospital and open heart surgery. I am also including several great books that we have read and used with him over the past three and a half years as we have helped him navigate worry and anxiety.
