Please be praying for baby cason
Cason has been growing so well and is such a happy boy! I shared several pictures this morning from the past month that show how big he’s getting! He’s up to 15lbs now – double his weight on the day he came home from the hospital! He is also talking and laughing all the time – I shared a video of that too! Now that we can go out in public, Cason has enjoyed meeting lots of friends and going to church. We also took our first trip to the zoo last week. Mr. Smiles didn’t find wearing elephant ears all that funny! Adam and I enjoy being his parents so much. He’s so much fun and gives the best snuggles. We’re so proud of him!i
Yesterday Cason had his first echocardiogram in nearly 3 months. Thankfully the repair to his aortic arch is still looking good, and his overall heart function is great! However we did get one piece of not-so-great news that I want to share today. Cason’s diagnosis of Shone’s variant also affects the valves in his heart. His mitral valve is called a “parachute valve” as it has only one papillary muscle controlling 2 leaflets which open and close, allowing blood to flow from the left atrium to the left ventricle. His echo yesterday revealed that this valve is not functioning as well as it was 3 months ago. The doctor measures the blood pressure across the valve when it opens to judge its function. At our last visit Cason’s pressure was classified as mild, at 4mmHg. Now, the pressure is moderate, at 8mmHg. The pressure will be classified as severe should it reach or exceed 10mmHg. If he reaches the severe level, he will need a surgical procedure to address it, most likely a valve replacement. This pressure is increased by movement and activity, which means as Cason grows and becomes more active, it is likely that this pressure would continue to increase unless the valve grows and begins functioning more effectively. Right now, Cason’s cardiologist wants us to wait and watch for signs that his heart function may be decreasing. We want to avoid valve replacement for as long as possible for lots of reasons – it is a high risk, difficult open-heart surgery that is made more complicated by smaller hearts. The long-term implications of mitral valve replacement are also more complicated than his first surgery. We always knew that Cason may have more challenges related to his heart in the future, but we’ve so been enjoying our healthy little boy, and we were pretty unprepared for this news. Based on his previous echos, doctors expected he wouldn’t need a valve replacement until adulthood. Our prayer is that his mitral valve would start functioning more effectively, and Cason won’t need another OHS for many more years, if ever! Our next follow up is in another 3 months, so we will know more then about what comes next. We’ll keep you posted!
-Laura Landry Coley
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