And……So….. along with a few Buts……..Results

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They put Parker through the whole mother lode of testing yesterday: An Echo, an EKG and a Heart Lung x-ray.


Parker’s BNP levels (a BNP is a blood test that tells us how hard Parker’s heart is having to work) are down from last month’s 120 to 74. Anything under 100 is considered normal.

Parker is up to 20.5 pounds. He looks great. He was bouncing off the walls of the cardiologist’s office. This is a first ever. The cardiologist was thrilled that he was looking so good and so active and so FAT. Okay, maybe not exactly FAT, but he does have the very beginning of a really teeny and super cute belly roll.

During the echo they were unable to find ANY leakage coming from his Tricuspid valve. The way they measure the level of Pulmonary Hypertension via an echo is to measure how far out blood squirts from the Tricuspid valve. Not the most technical of explanations, but you get the idea. With NO leaking from this valve they were unable to detect ANY abnormal pulmonary pressures for Parker via the echo.

This is fantastic news!


And this is a biggie……on the x-ray the right side of Parker’s heart is still enlarged. And on the EKG it still show pulmonary hypertension levels. It won’t be until we see changes in these two area that we will know if the trach is the magic we need or not.


And this too is important…… would take much longer than just two months for the muscle on the right side of Parker’s heart to start thinning out. The same with the EKG no longer showing any PH signals. It took almost three years for the right side of Parker’s heart to thicken, it will take longer than two months for it to start thinning out.


We are going to be scheduled for a right heart cath procedure before Thanksgiving. A right heart cath is the gold standard for detecting and pin pointing EXACT pulmonary pressures.

And I’m gonna need me a big old never ending bottle of nerve pills for this one folks.

We did get good news from the echo. For that I am grateful. Really grateful.

I’ll be totally honest. I’m greedy. I want more. I want Parker’s PH values to be turned around to the point of it no longer being an issue in our lives. One can live a long life with modest but stable pulmonary pressures. I’ll even take modest but stable. But the long life I am not budging on. It’s non-negotiable. Parker’s fought too hard.

And we simply love him too much.

**ETA** Please don’t think I don’t see the great blessings in yesterday’s visit. We were thrilled to see the positive results in the Echo. That was very encouraging. We even celebrated with pizza last night! We are just trying to be cautiously optimistic . :)


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