Ode to Joy

This is one of Tiernan's favorite pieces of music. Ever since he was the very Wee T. 

Like this.

He and I would sit together at home and watch the Vancouver Winter Olympics that year and this commercial would come on.





And no matter what, it had his immediate and complete attention. Mid scream/puke-fest he would calm down and listen.  It got to the point where I would just hum it in the car praying he would stop crying.

It usually worked.

And now I share his enduring love for Beethoven's Ode To Joy as we come ever closer to his 3rd surgery.

We had a phone conference with Dr. Hanley (the "Beethoven of  Pediatric Cardiothoracic Surgeons") last week.  We are so encouraged.  He said he is very confident in his recommendation to septate.

(FYI, I will also refer to this as the Bi-vent surgery, or bi-v)

He doesn't do these surgeries all the time, but maybe 2-3 a year.  But when he has recommended a child for the bi-v, it has been successful every time.  Only a few times has he gotten in to the surgery and, before trying to septate, has determined it to be a poor choice and had to go to plan B.  I feel like these sorts of statistics speak volumes.

For now, we will get a cardiac MRI sometime in January, and possibly a second cath.  The MRI will be the last thing that could change the course of this surgery, pre-operatively.  They will get a 3D picture that can show his cardiac output from that small LV.  That is, how much blood is that ventricle pumping at a time and is it sufficient to support a bi-v physiology?  Dr. H just successfully performed a bi-v about a week ago on a child with a cardiac output of 30mLs per something something something.  So we are hoping his MRI shows a CO of anything more than 30.

If that still says bi-v is a go, then we will schedule for April.  At that point it will rest on Dr. H to look intraoperatively (during surgery) to make sure the chordal tissue is not attached to the wrong side of the existing septum.

In a normal heart, the valves are basically tethered in place by chordal tissue...I think of them as bungee cords.  They keep the valve from prolapsing.  But since his septum is incomplete, it's possible that one of those chords might be tethered to the RIGHT side of the septum instead of the LEFT.  If that is true, then Dr. H can not septate.  You cannot sever chordal tissue.  So if that is the case, and they canNOT see then pre-op, then he will have to abandon the bi-v and he will attend to fixing the valve, since he will already be on bi-pass.  He will not, however, just continue on to the fontan.  He could if we asked him to, but his professional opinion is that it is far better to repair a valve (bi-pass is essential for this) and then allow the child to recover for somewhere around 6 months before doing the fontan OFF bi-pass.  So. because he is the expert here, we will go with what he recommends.

However, we are incredibly optimistic at this point that the bi-v is in our future.

For now, we wait on the cardiac MRI to confirm yes or no.

We are fortunate enough to have so many amazing doctors counselling us through these decisions.  One of whom is Dr. Obayashi.  He is now on the other side of this country, but we are communicating and he will, likely as not, show up at Lucille Packard during our stay.  Because Dr O wouldn't miss that.  :)  Anyway, his last text to me was this:

Re: Hanley:
"He's brilliant and technically phenomenal.  In my opinion, you're getting the best in the World.  Knowing this will help you move forward without much hesitation or regrets.  I'm happy for Tiernan and the family."

So grateful for all the people God has placed in our path.  I listen to Ode to Joy with a new appreciation these days.

Here is another version of that inspired piece that is worth watching.