Kiran had his regular cardiologist appointment today. For me, it was probably the most beneficial outcome I could ask for, save just a completely stable heart which I knew was unlikely.
He did amazing, as usual, with his echo and EKG. We got to meet the daughter of a former echo tech who we absolutely adored, and the apple didn’t fall far from the tree. During his echo, Kiran got to sit up for parts of it, take a good look at the screen showing his heart, and even “help” by holding her hand. Her calm demeanor and patience with him made the whole experience better.
Dr R let us know that Kiran’s pressures are slowly rising. The last few appts have been in the 40’s and now they are jumping to the 50’s. Also, his last cath was apparently in 2017 (time flies), so it’s not a bad idea to get in there and see what they can do to better the situation.
Long story short: Kiran’s test results are indicative but not urgent or emergent that it is time for the cath lab in the next year. Dr R is hopeful they can do some ballooning and/or stenting to buy us time to get through his teen growth spurt before needing a valve replacement. This could potentially mean only one more open heart surgery, if we can hold off needing it until he’s essentially in his adult form.
After multiple questions about the strength of the cath team currently, the doctor’s comfort level with timeline decision, recovery, risk, and restrictions following stent placement ….
We tentatively decided to wait until next June to go to the cath lab. We will be checking back in with cardiology in six months, so if anything drastic changes, that timeline will also.
But having this time to plan and process will be important for our family, especially as I am jumping into a new career and Kiran is wanting to live his best life this summer.
Since his heart can’t just be forever fixed, I’ll take non-urgent news and time to process and plan to move forward.
Jalebi's Heart, My Heart 