Music to my ears!

The Melody Valve. A play on words? Yes.

Ethan's routine cardiology appointment was Wednesday morning with the fantastic Dr Kaine.
EKG-same as previous
Echo-essentially the same as his previous. The donor valve that was put in in 2011 is still showing moderate amount of leakage, however Ethan's right heart is not showing any significant back-up from it. In fact, the donor valve, over time, has narrowed, allowing less leakage to flow backwards through the valve. This is good news.
The pressure across his pulmonary artery is normal. Yep-normal!
The pressure in his right ventricle is normal. Yep- that word again-love it!
No need to start back up on Lasix, but probably will need to before years end.
Stay on same dose of Digoxin.
Next Cardiology appointment?? 6 glorious months!!!! Woo-hoo! That's a long time for us!

And-the most fantastic news of the appointment......
When Ethan needs this pulmonary valve replaced, he is now a candidate for the Melody Transcatheter Pulmonary Valve. What is so awesome about this?
NO OPEN HEART. Yep, read that again. NO OPEN HEART!
This valve is placed by way of femoral catheter-or through a vessel in the groin.
The post-op stay is about 1 day, and usually only need 1 week to resume normal activities!
AND they are doing them at Mercy now!
We looked into this option for the bald kids PV replacement last time, however, since he didn't have any conduit in place, he was not a candidate. Since the donor valve has provided a conduit, it can now be done. This does not mean it is in his immediate future, but no doubt that it will need re-done due to the leakage. Could be 1 year, could be 10. We've heard all that before, and we stopped worrying about time frames a long time ago. When it's time, it's time.

There would be a few hurdles to cross, but Dr Kaine did not seem deterred by them. The main one being the valve is placed by a 23 French catheter, which is way too big for our little guys vessels. This could be overcome by having the CV surgeon acquire access.
Or, if that is not possible, there is another Transcatheter valve that does not yet have FDA approval that only requires utilizing a 14 French catheter-which the bald kid could handle just fine. That is a few years out, but an option should it be FDA approved by the time he needs a replacement.

Lots of medical mumbo jumbo, and sorry if this makes no sense to most of you. But know this-it is all fabulous news for us. We are so fortunate for the medical advances available to prolong our sweet boys life!
Being this is Congenital Heart Defect Awareness Week, we found it to be rather fitting to finally receive such awesome news about our little guys heart.

For all our heart warrior friends, keep up the good fight, and know we are fighting alongside you! For those families whose heart warriors have lost the battle, know you are never far from our thoughts.