Always Late with the Update

Kiran saw his cardiologist a week and a half ago. The fantastic news is his heart is stable from six months ago – no more decline in function. This means Dr. R. is less sure Kiran will need an intervention as soon as he originally thought. However, I had some concerns with noticing increased fatigue. He has been falling asleep somewhat frequently during rest time at school – which, if you know Kiran at all, he has absolutely earned himself the nickname “The Supervisor” at school because he ALWAYS has to know what’s happening around him. And he has been getting tired earlier at night, too, often seeming ready for bed by 6:30!

With all of that in mind, we made the decision to move forward in scheduling an MRI of his heart, to get more information about its current function. This is less invasive than going into the cath lab, obviously, and the cath lab would likely require an MRI of the heart prior anyway, so we aren’t adding any unnecessary steps if we find Kiran does need an intervention.

It all just freaks me out, honestly. His heart has been the least interesting thing about his medical care and daily life for so long…I’m not ready.

Other than that, Dr. M. took a look at his feet again. I get tired of people saying things like “possible future surgery” so I am being super diligent again with the foot stretching and making sure Kiran has the appropriate shoes. Not that my diligence ever stopped, but I continue to do everything possible to avoid any need for future casting or surgery with his feet. Overall, Dr. M. thought things looked pretty good – and we were able to graduate to annual appointments, finally, with him.

Another necessary appointment day in Iowa City in the books. We survived, no terrible news, and the appropriate steps forward for Kiran. One step at a time.

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