To be perfectly honest, it hasn't completely sunk in yet, and I'm tentatively scheduling flights for he and I back home this weekend-still kind of waiting for E to throw us a curve ball.
So, long, long, long story as short as possible;
Ethan was intubated about 9:30 am yesterday and headed to MRI.
The MRI confirmed free regurgitation of the PV (pulmonary valve)- greater than 50%
Right and left heart dysfunction
Mild-moderate regurgitation of the TV (tricuspid valve)- 13%
And a dyssynchrony of the ventricular septum
Dyssynchrony being that the different parts of E's heart don't function in sync with one another-thus being the thought process behind why he runs such a low heart rate at times-bradycardia.
*All of these findings we knew-but had to confirm.
The best thing the MRI revealed to us is that though his ventricular septum is indeed dyssynchronous,
HOWEVER not enough so that bi-ventricular pacing would be needed.
Score 1 Team Ethan!
The MRI also showed that when the contrast Gadolinium was injected it showed he has no areas of infarction on his septum!!
Score 2 for Team Ethan!
All in all-GREAT news from the MRI overall.
On to the echo, still intubated and doing great. The bald kid loves his sedation!
Echo findings confirmed the findings of the MRI, and kind of seems redundant, but Dr Marx wanted a good 3D one to see where the previous conduit was at, and since he was perfectly still-get it pre-cath.
On to the Cath Lab with Dr Porras and Dr Bentham at bedside, and Dr Marx consulting findings with Drs Baird, Lock and Marshall.
No trouble gaining access for the diagnostic part of the cath in Ethan's right groin.
Measured pressures-all within normal limits by Ethan standards.
Then they measured the conduit where the previous-now free flowing-valve should have been.
It was within the measurement constraints to support a Melody Valve!
Score 3 for Team Ethan!
Now to balloon the conduit to the size it would be with the Melody in place..and it held!
Score 4!
I got a phone call from Nurse Kate at this point telling me there was still much discussion about attempting to place the Melody Valve or not.
I was figuring not, and she agreed.
Then to inject the coronary arteries to make sure that if the Melody were in place, those would not be obstructed, thus blocking off blood flow to the rest of his heart. And they found that it did NOT cause coronary artery compression, in fact they discovered Ethan had an anomalous coronary artery that runs behind his aorta instead of in front of it anyway-so no chance for compression!
Score 5!
Then they injected the peripheral pulmonary vessels and found he has NO stenosis or obstructions that could have been causing the PV to fail simply from being backed up.
Score 6!
Then they placed a stent in the conduit to support the Melody Valve.
I got another phone call from Nurse Kate sounding a little more optimistic that the Melody valve attempt was looking more likely but much discussion was taking place.
Score 7!
Then the cowboys took the reins and began dilating to get the 22 French sheath in that is required to deploy the Melody Valve.
And they got it in.
It seated nicely in the stent.
It began working fabulously immediately!
TOUCHDOWN!!
Then the EP (electrophysiology) eval took place and they found that Ethan has NO accessory electrical pathways that could be dangerous to him.
EXTRA POINT!
Much debate was then made about whether to wake him up after the required down time for the cath, or keep him sedated and intubated. Much to our agreement, he moved to the CVICU and was kept sedated and intubated all night. If he awoke and started kicking around, in true Ethan fashion, there would have been no way but surgery to stop the bleeding-thus, keep the little man down.
He had NO strange rhythms, no Brady spells lower than the 40's, no pressure issues and no bleeding from the HUGE (per Dr Porras) hole they put in his groin.
They also wanted to keep him intubated for an echo this morning to ensure everything still looked good and they didn't need to take him to the operating room today.
And lo and behold....everything looked great overnight and on today's chest X-ray and echo!
He got extubated about 11:30 and he's holding awesome on 1.5 liter of oxygen by nasal cannula. They will keep the oxygen on him until all the sedation is out of his system.
In talking to the surgeon and cards today, they felt Ethan could not, and would not tolerate an open heart/bypass surgery. Once they realized that, they felt their only option to help him, and Ethan's only option for long term survival, was getting the Melody Valve in.
So. They. Did.
Kind of scary to think we were supposed to have an open heart in KC at the end of this month....
Nobody could have hoped for a better-though completely unexpected-outcome!
Even for a place like CHB, every cardiologist we spoke with confirmed he was "unique, tricky, complicated and challenging".
Of course he is....
He's Ethan Rawley.
Snuck in a pic post extubation:
Look at those pink, not mottled, warm feet!
Going to the floor now-will update with discharge and post-op plans later tonight!!
Thanks for everyone sending your good wishes and prayers to our special boy!
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