A second opinion, and life goes on

It is hard to believe it has been just a month since we discovered my boy has two heart defects that will require surgery to repair. Life continues to fly by with science fair projects, end-of-year school performances and wrap-up of our spring sports schedule. Sometimes, I can even forget we have this major event staring us in the face!

Not so, last Monday. My boy and I met with a cardiologist for a second opinion and a repeat echocardiogram. Not surprisingly, the second opinion was the same as the first. Yes, there are two large defects that need to be repaired to prevent further compromise of my son’s heart function. Knowing that I’m a nurse practitioner, this cardiologist even took the time to do the echo himself, walking me through the pictures and showing me the defects and altered blood flow. He also included me in the assessment, putting my hand on my boy’s chest so I could feel the force of his heart beating against his ribs, not a typical assessment finding!

We talked about how healthy my son seems, and the doctor explained that because my boy is always working at an increased effort, he has less reserve. Light bulb moment! That explains why he struggles more than I would expect to peddle up a mountain on his mountain bike and why I’ve twice had to carry him the last 100 yards up Mt. Evans, a 14,000-foot mountain you can drive up most of the way. I would frequently get frustrated with him during these times. Often, the biking was at his request, and then he “refused” to keep up, often throwing a fit when the rest of us peddled on ahead. Pile on the “mommy guilt!”

Although I really appreciated the second physician’s time and patience with us, I will stick with the original doctor’s office. It is more convenient and is associated with one of the best children’s hospitals in the country. So, surgery is scheduled for the third week of June with the chief of the cardiothoracic department. He comes highly recommended and he has an NP as his assistant. (He can’t be all bad!)

Years ago, I worked in an adult ICU doing open-heart recovery and was the lead on the balloon-pump program. The up side is, I am prepared for the surgery, knowing what to expect. The down side is, I keep remembering all the complications, all the times people returned to the unit still “open,” the times I rushed to the OR with the balloon pump praying for a miracle, the times I sat with families after passing along the news that “things are not going well.” I keep holding to the truth that my boy is healthy and strong, and that this is corrective and planned surgery—not an emergent response to an ailing heart with blocked blood flow.

In the meantime, life goes on with Cub Scouts and camping trips that were planned prior to surgery, together with baseball practice and building of bike ramps, using construction debris scavenged from around our cul-de-sac—typical, active boy fun.

For Reflections on Nursing Leadership (RNL), published by the Honor Society of Nursing, Sigma Theta Tau International.

From practitioner to parent of a patient

Seems I always start a post with a statement of how long it has been since I have managed to write or how busy life tends to become. It seems I blink, and time just flies past—between school projects, spring sports, a big inspection at work and training for a half marathon, there is barely time to breathe some days.

But summer is just around the corner and, thanks to a fluke episode, my boy is ensuring that we will slow down over the school break. He just turned 9 and is an active, typical little boy—playing baseball and riding his bike over any jump he can find. A few weeks ago, he had what appeared to be a minor viral illness but then suffered what is now being termed a fainting episode. Because it mimicked seizure activity, off to the ER we went.

A routine ECG turned up some thickening of the right side of his heart, so we saw a cardiologist a few days later. A long afternoon spent in the cardiologist’s office ended up in a surprise diagnosis of two congenital heart defects that could result in significant damage if we don’t repair them. Needless to say, I was in shock and still am two weeks later. My healthy, typically wild but extremely kind-hearted boy is shunting oxygenated blood back into his right heart with every beat!

Yes, we are getting a second opinion in a week but, because I have confidence in the diagnosis, the surgery is scheduled for the middle of June—a week after school ends. He will spend the summer being spoiled rotten, and the goal is to be back in school when it starts in mid-August. The cardiologist even said we could sign up for fall baseball. I think he is as optimistic as I am about all this, something I really appreciate.

In the meantime, my son has no activity restrictions, so we are pressing on with life. We fill our free time with baseball and soccer, bike rides and yard work, Cub Scouts and Girl Scouts. We have tickets to see the Rapids and the Rockies and hope to throw a big presurgery party in June. I firmly believe attitude can affect outcome, and we will enter this with the best attitudes we can muster! I will do my best to keep this site updated with our progress on this new adventure in life and know we are wrapped in prayer every day by so many people, something I am very thankful for and believe is contributing to my calm emotions.

For Reflections on Nursing Leadership (RNL), published by the Honor Society of Nursing, Sigma Theta Tau International.