It has been a very long day, and I am exhausted and processing.

Kiran is such an awesome patient. I am always so proud of him and amazed at his peacefulness and bravery. I know this has been his life, and he knows nothing different, but he really is an amazing kid.

The news I will share – the biggest news of the day – is the boy’s heart. First, the good: It is not yet time for an intervention. Now, the bad: It likely will be within the next year.

The pressures we are watching through his valve have increased. Nine months ago, they were around 48, and today, they were 58. Mid-60s indicates time for intervention, so he seems to be quickly moving there. However, his right ventricle still appears normal size, so it’s not working too hard pumping the blood through. Thats the other piece of what we are watching.

Dr R wants to see him back in 6 months (9 months ago, he was good with a year; I felt more comfortable with a sooner check-in), so I know we are more closely monitoring heart function.

It is still most likely that the intervention needed will be ballooning (and potential stent placement) done in the cath lab. This should buy us more time before his next open heart surgery is necessary.

I am thankful we didn’t have to schedule a cath procedure today, but I was not expecting that large of a pressure increase.

The time is approaching, but it’s not now.