Thanks for all your good thoughts!

Sammy's heart looks and sounds great. We were concerned because he seems to get out of breath quicker and a bit bluer around the mouth when he's out of breath. Of course, he's a wild man who doesn't know how to slow down, but Dr. Brown confirmed that kids with the Glenn anatomy will do just that - turn blue, run out of breath - the bigger they get. Something about the blood flow (and increased need for it with exercise) - but that Sammy's body is doing exactly what it's supposed to. Doesn't make those wheezing attacks any easier on us, but at least we know that it's completely normal. Now if someone could get my kid to sit still for a bit...

(For the record, when I say "turn blue" - I mean his lips look blueberry-stained and he gets blueish around the mouth. If you didn't know what to look for, you might not notice it - but we do. I've heard post-Fontan parents comment on how "pink" their child looked. It'll be bizarre post-Fontan to not have those darkish lips - I'm getting kind of used to them - I can only think that they'll look so pale!)

His tricuspid valve regurgitation is still mild, thank god. And no, he didn't take the EKG stickers the way I had hoped. Oh well. There was lots of crying and screaming and "I go!" pointing fingers at the door - but all in all, a good visit. We also got the okay to switch him from his 3x a day Captopril to his twice-a-day Enalapril - no more waking him during naps, no more packing his meds to run to the store - YAY! So now it's just Enalapril (which lowers his blood pressure so his heart doesn't need to work as hard) and baby aspirin.

We're on track for Sammy's cath sometime in January, with a potential for an overnight stay at that point (if they do anything internal besides check pressures, etc - he mentioned coiling off some of the collateral veins if needed). And then - Fontan sometime May or June. It'll be nice to have our summer to enjoy, instead of spending it worrying and with the surgery hanging over our heads.

I've emailed Dr. Brown a bit recently, and not to jinx anything, but he's really helped to calm my nerves about the surgery. I'm not looking forward to handing Sammy over again, but I don't feel the overwhelming dread that's been hanging over me the past two months. I asked about figures and survival rates and risks - the risk of a stroke is minimal, but still present with any intervention. The survival rate we had been quoted prior for this surgery was about 95% - a great figure, but it loops around in my head as "1 in 20 won't make it". That's too high for my comfort.

Yesterday, he clarified it for me - that rate also includes older patients (adults who are still considered patients at Children's because they've been patients since they were children). Apparently, the mortality rate is higher for adult Fontans and Fontan revisions, and since that's included in the 95%, the survival rate is much higher for children in Sammy's condition -

(Which, btw, is "healthy" - he called him "healthy"!!!! No medical provider - let alone his cardiologist - has ever called him "healthy" without a disclaimer (for example - "I mean, healthy, all things considered").

Anyway, he gave me a rate of "higher than 99%". Higher than 99%! That's absolutely fantastically wonderful! Again, not to jinx anything - knock on wood.

Sammy's still measuring in on the small side - 21lbs at 19 months - but no one seemed overly concerned. He's developing just as any other 19 month old should, and it's no surprise that he burns so many calories the way he just goes, goes, goes.

In other heart news, it looks like Jack is set to go home TODAY. He just had heart surgery on FRIDAY to repair his ECD/AVSD - it's Tuesday. That is just amazing. Go Jack!