Musings of a Marfan Mom

Our Cardiology Trip

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Twice a year we travel out of state for J’s cardiology appointments. I have mine in the summer with him and all 4 of us make the trip, but the fall is just for him. J’s appointment fell first thing in the morning on Tuesday, so he and I flew down Monday. We caught the earliest flight, which was actually pretty nice so that we could spend the day doing fun things. I don’t buy into (no pun intended) the whole idea of giving your kids present for every medical visit they have to have, but I do want to pair some fun with the hard stuff when possible. And, I promised M a “mommy date” when I get back from seeing my mom and sister so that he doesn’t feel left out of the 1:1 time.

Excited to fly!


We spent Monday morning at the national aquarium. J loved the bubble columns. Also, for those that don’t know, if your child has a mobility disability they’ll give you a tag so that you can use your stroller (everyone else has to check their strollers and carry their children). The tag also gives you use of the elevators, some of which seem to be restricted to people with disabilities. We learned this by accident during our first trip to the aquarium, when an employee noticed J’s AFOs and told us we could use the stroller. Definitely enabled us to stay longer this time, as J still tired out pretty easily.


Tuesday morning we were up bright and early for the first echo of the day. This time I requested sedation for J, because in June he was terrified and tried to hide during the echo, then screamed and fidgeted the entire time while I restrained him on my lap. He had a runny nose so we just did versed to keep him awake but calm, but that was enough. I was annoyed that 3 different nurses tried to talk me out of letting him have the meds, but I’m glad I stuck by my guns. It’s worth it to make the experience anxiety-free for J.

Versed + an iPad makes for a relaxed kid


I adore our nurse practitioner. I’ve worked with her since I was young. It was great to catch up with her, but even better to hear that the medication is working for J and his z-score stayed stable! We’ll be back in 6 months.
Baltimore

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One Comment

  1. Yea for stable!!!!!! And yes that aquarium is awesome.

    Next time you are here we are definitely coming up to see you!

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