TeleMayo

We just spent almost an hour and a half on a teleconference with the Long QT Specialist at Mayo in Rochester.   

We like this doctor.  A lot.  He was very soothing and confident and reassuring.  I left the call with less dread but there is so much we still have to figure out.  Nicholas seems at peace with what's about to transpire in the upcoming weeks.  But he is always so calm and collected.  He gets that from his Dad.  Not from me.  I am a blubbering mess when confronted with life matters and I left much of my mascara back in Jacksonville on a Kleenex in the trash can.  

This is what we learned:

Nicholas will be undergoing OPEN HEART SURGERY in January or February.  Because his heart will be exposed, the extraction of the leads will not be done with a laser but with the surgeon's own hands and the risk of failure pretty much goes away.  That was the part that had me hosed up when I first learned about the leads having to come out.  Before they knew about the valve, the leads could have been extracted through an incision on the side. They didn't have to open him up.  But now they do and it's okay because it will make that part of it easier and less risky. 

The doctor recommends that the entire machine be extracted from his chest and that he will be just fine as long as he continues taking his heart meds on a daily basis.  THIS IS AWESOME NEWS!!!

But wait, there's more! 

Just before he was finished with us, he asked if we minded holding for a few minutes.  He wanted to try and contact the surgeon who is most expert at their location, just to get his take on the valve situation.  

10 minutes later, he appeared back on the screen and told us this:

"Dr. Dearani suggested that if Nicholas and his mother and father wanted to, he should come to the Rochester campus to have the valve repair/replacement performed here. Dr. Dearani is the world's foremost surgeon in tricuspid valve repair for Ebstein malformations. He has also published on successful repair of tricuspid valves in the setting of ICD leads. From his vantage point, he feels that if there is any chance for the tricuspid valve to be repaired and not require a valve replacement, it should be done by him. He thinks actually that there is probably a 90% chance that he should be able to repair it instead of replace it which if so this would be fantastic."

So maybe, just maybe he gets to keep his own valve after all.  The only downside is having to travel 1500 miles away to have it done.  But we'll do it.  In a heartbeat.

We still have a conference set up with the surgeon who would operate should Nicholas decide he wants it done in Jacksonville.  Three hours away vs. 20.5 hours from home.  

Unless the Jacksonville doc gives us the same odds, we'll be flying North.

...

Afterwards, Nicholas and his girlfriend Tara came over for Christmas dinner, two days early.  They'll be celebrating with her family in Tampa.  This will be my first Christmas without him.  

After dinner they opened their presents and we opened the ones they gave us.  But I'd already gotten the very best gift I could've hoped for.  And that was knowing that there's a very good chance my son can leave the hospital with a repaired heart instead of with a part that has a sell by date.  

After we hugged them good bye, Mark noticed a splotch or two of mascara on my shirtsleeve.  Tattletale...