Waiting for his echo at this cardiology appointment

We had our monthly cardiology appointment this past Tuesday. This was the first appointment we went by ourselves, just me and Bronson. I had expected that he wouldn’t have an echo because he had one last month and the plan has been to have echo’s every other month. He did have an echo at this appointment.  Beth, our adored Nurse Practitioner, came into the room after the echo and of course followed protocol and assured me that clinically all of his vitals were wonderful. This includes weight gain, O2 saturations, blood pressures, and EKG. And then came the… BUT. Last month they had noticed some bulging/swelling in his aortic arch. She and Dr. Rhee made the decision not to inform me then, because it was insignificant at the time. They knew they would be checking it again in the echo he had this month, which is why he had one. The bulge, or swelling I think I remember her referring to it as, did indeed increase. It did enough for them to inform me and enough for them to also notify Dr. T (his cardiologist in Boston). She and Dr. Rhee wanted to negate the possibility of the swelling in his arch as being aneurysmal. When I heard that, my mind instantly defaulted to heart attack. Dr. T,  being as insanely busy as he is, never replied to any of their attempts to reach him. Thankfully, I have a group of parents who also travel to Boston for their cardiac care, who unanimously assured me that Dr. T will indeed respond only if it’s critical. Going with the benefit of the doubt, he apparently was NOT concerned. Although the most appreciated, and devoted to his patients, surgeon, that Dr

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. Emani is, returned my page within less than five minutes. He briefly discussed the medical implications with Beth and advised that he would review the echo and consult back with his opinion. He did not give us a time frame though. Being the already, insanely inpatient person that I am, and already full of anxiety about the potential complications with the modifications to promote growth of his left ventricle, I was ready to BLOW UP the lines of communication to Dr. T until I knew what the next step would be! Instead, I left a message with Dr. Emani’s receptionist on Thursday. He of course called me back at about 6pm Boston time and confirmed that together with Dr. T that they are not worried. He explained that the swelling that Beth and Dr. Rhee thought they were seeing in the echo’s is appearing worse because of the angle that the images were taken from. He also confirmed that he intentionally constructed the aortic arch to be larger than usual because it needs to be able to effectively withstand the increased flow of blood. WHEW! RELIEF! Amid all of this angst and anxiety, I forgot to celebrate that Beth confirmed that his mitral valve has grown double the size since his last echo! This is miraculous news as long as his left ventricle is growing along with it. We won’t know about any lv growth until he has a heart catheter.

On a lighter note, the Bronsonator is 9 months! He weighs 18lbs and 5 oz. He’s been lingering at 18 lbs since he’s been mobile. Referring to “mobile”, he has been thrilled with his early developed skill of standing and yes, walking. Walking while holding onto the ottoman, along the sectional, the bathtub, and anything he can hold onto. He is so excited about his new found skill that it is the ONLY thing he absolutely insists on doing! I mean insist in the most literal sense. He has perfected his tantrum… skill (???) or at least he is trying to perfect it as a skill because he defaults to his oh so dramatic fits anytime we don’t position him to stand/walk. He even locks his knees so his legs are straight when we sit him down, thus leaving him standing. This seems exciting, and it is, except that he has skipped a crucially beneficial developmental milestone…. sitting up from laying down. He does not know how to get into a sitting position from laying down which only compounds his frustration when he wants to stand. He needs to be sitting up before he can stand. Crawling is the only way he’s going to learn how to and right now he’s scooting. Although, he has had some moments in the last few days where he’s got into a crawl stance and then doesn’t go anywhere. ;oD !! He just drops his tummy back to floor and off he goes! We’ve been giving him more floor time to promote his mastering of all of these necessary skills for INDEPENDENT mobility. Pictures below ;o)


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