It is amazing how going to see the cardiologist had become such a benign part of our routine with Kiran. For so long, it was all the same information: he’s still doing ok, let’s keep watch, he can grow bigger before we need to intervene. We always knew the story was going to unfold, but we were really enjoying that chapter.
Now, we have flipped the page. Our cardiologist decided it was time to start Kiran on his first heart medication. The decision was made based on the fact we have been seeing higher oxygen saturations lately (Counterintuitively, this is not a good thing, given his anatomy. We suspected as much. It likely means some of his pressures in his collaterals are too high.), and he has been having the continued problems with high respiratory rate/ retractions.
So, tomorrow morning, we start him on Lasix. This should help lower some of the pressures and pull fluid away from the lungs. Here’s hoping we see a change.
Of course, we also discussed surgery and Stanford. And even though I know it and live with the knowledge every single day, my heart still drops anytime I hear our cardiologist refer to Kiran’s condition as complex.
So much of me is not ready to have to start this chapter of our story: the surgery chapter. It will be a long one. A difficult one. A terrifying one. And a completely necessary part of his story.
Dear Holly,
I so appreciate hearing from you and the thought process you share as you continue your journey. Your openness and truthful transparency helps us pray better for your family. With love, J
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