We had our surgical consult with Bodie's surgeon today. Finding the good in a surgical consult is a little like finding the good in getting a $500 speeding ticket. You have to go with "hey, at least I have a car to speed in" or "well, at least it wasn't a ticket for crossing a double yellow line into the carpool line while speeding, with 15 people in the backseat sans seat belts." Ya gotta dig deep. That's kind of like what it's like to have a consult with a surgeon who's going to be performing open heart surgery on your preschooler. It's not exactly a great experience any way you cut it. So you gotta dig deep to find the good.
But I will say, as far as surgical consults go, today actually went well. We didn't hear anything we didn't already know, which was good. We're all set for pre-op on Friday, July 26th with the Fontan on July 29th.
And, in true Bodie fashion, he provided some memorable moments.
Like, when the nurse practitioner wanted to see his groin incision, since we had mentioned he had a allergic rash from the cath. I asked Bodie if he would show it to her, imagining that I would help him pull down his shorts a bit. Nope. He proceeded to turn to her and full on drop trow. No shame with this kid, I tell ya. I guess the bright side is he was cooperative.
Or when, less than 30 seconds after the surgeon had come into the consult room, Bodie looks at me and says "I have to pee!!!!" Yes, we had been there 3 and 1/2 hours and Bodie didn't realize until we finally had our moment with this incredible world renowned surgeon to realize he had to go pee right then. Ah, well, considering our appointment time was 12:30 and we were seeing him at 4:15, we didn't feel so guilty making him wait while I quickly ran Bodie to the bathroom. ;-) (in all fairness, yes, the wait is annoying, but to us, it's a small price to pay for Bodie's surgical care to be provided by a surgeon of his caliber; if it was Bodie on the operating table, we'd want him to stay there, too - and not run off to some scheduled consult with a family...)
Here are the details (mostly for my heart mamas, who will get this stuff) - the "plan" (understanding that things could change once they get inside):
1. Type of Fontan
He plans to do a fenestrated extra-cardiac Fontan on Bodie.
A fenestration is essentially a pop-off valve of sorts, that will still allow for some mixing of deoxygenated and oxygenated blood; there is a big school of thought that believes fenestration allows the body to adjust easier to the new Fontan circulation and may possibly avoid complications later.
There was some question about not doing a fenestration since Bodie's pressures had looked good during his cath. But, it seems to makes the most sense for 2 reasons - (1) Bodie has a history of "twitchy lungs," that generally don't respond particularly well to being messed with. Because of this, hemodynamically, he's probably a better candidate for the fenestration, to allow those lungs time to adjust to the new circulation. (2) leaving a larger fenestration could allow continued access to the right ventricle. Given Bodie's penchant for rhythm issues, maintaining access to that ventricle for future ablations might be important. So, should Bodie's EP need to attempt another ablation, he could go in through the fenestration to access the heart.
The "plan" is to close the fenestration in the cath lab in 3-4 years. This means that Bodie's 02 sats post-Fontan won't be quite as high as we had hoped (rather than being close to 100%, he'll probably be closer to the low 90's due to the mixing of blood). That part is a bummer, but it's pretty clear that it's what's best for Bodie long-term, so we're ok with that.
Every kid with the Fontan is different, but he did give us some ballpark expectations, assuming things go well. We can expect 7-10 days in the hospital (longer if his body has a hard time adjusting to the new circulation; some kids do). He gave about a 50/50 chance Bodie will come back from the OR on the ventilator. Most kids come back from the Fontan already extubated, but with Bodie's history of lung issues, we were already expecting him to come back intubated and on nitric oxide. The good news is, even if he does, they'll try to extubate as quickly as they can.
Statistics are fairly useless, since they don't give you much comfort if you fall on the wrong side of them, but we did ask and were told there's about a 1-2% of something major going wrong during the Fontan surgery in general, and that number increases slightly with the Fenestration, to maybe 2-3%. Definitely in our favor, which is comforting - please be praying for Bodie not to have ANY major complications.
Bodie's surgeon routinely puts post-Fontan kids on Coumadin prophylactically, to reduce the risk of clots forming along the conduit that is placed. If you don't know much about Coumadin, it's a blood thinner that requires weekly blood draws and careful adherence to diet (i.e. no leafy green vegetables). Oh, and wait - the best part is that it really thins your blood, so you have to be careful about head injuries. Super awesome for a kid like Bodie, who falls and hits his head at least once a week as it is. When I told our surgeon that Bodie has the awesome combination of lack of core strength, terrible spacial awareness and no impulse control, he started laughing and agreed that perhaps Bodie wasn't the best candidate for Coumadin. So, the plan, unless he has an emergent situation requiring Coumadin, is just to manage him post-operatively with aspirin alone. HUGE win! So excited about this one!
As always, we so appreciate your prayers and covet them in the weeks ahead. Bodie has a runny nose right now; please pray that his body moves through this cold quickly and that it's long gone well before surgery time. We'll also be providing info soon about how to make a directed blood donation for Bodie's surgery, so be looking for that!