Today was a hard day for me emotionally, so I am going to keep this update short.
Kiran’s heart function is showing no change from August when we last saw his cardiologist. Everything looks good.
He ordered some labs to check some simple things that might be causing the symptoms we are seeing: thyroid, iron levels, and some other screening. He thinks compression socks (so simple!) would help with blood flow to his lower legs and feet. Or perhaps starting a low dose of aspirin would keep blood flowing better and help with some of the color changes.
He is less concerned now that we are seeing redness on the left side as well. He thinks it may just be an autonomic disorder affecting his blood vessel dilation. Apparently this can occur in kids with developmental delays because their nervous system function is different due to how they are developing.
He still wants us to rule out other factors so feels the follow-up with a neurologist is still warranted. The neurologist will decide if another brain mri and chest mri are necessary to rule out something else (like a tumor; I wish he’d stop saying that word) causing nervous system dysfunction.
It was a long day that ended in a blood draw – not Kiran’s favorite at all but he was an excellent patient through all the poking and prodding today. Kiran wasted no time falling asleep on the way home.
I am relieved – and still baffled. And tired.