Sunday, May 2, 2010

In for the Fontan and out with Ear Tubes: Part I

Last Thursday had been planned for weeks. Years, really. Luna's last of three surgeries, which we knew she would have to endure from the time she was diagnosed, at just 20 weeks gestation, had been scheduled for 6am. The Architect and I spent the entire week leading up to this All Important Date-and one that justly sends many a heart mommy and daddy to the doctor for a refill on sedatives-calling for referrals, booking hotel accommodations, arranging for our four-year-old to sleep over friends’ houses, and coordinating rides to and from school for the before-mentioned four-year-old.

The afternoon before the surgery was scheduled I called Luna's surgeon. Lu's old surgeon took a position at Columbia, and we were to have a new one. This doctor was assigned to us by Luna's esteemed team. I didn't for a minute doubt his competence, but I thought I should at least speak with him before we handed our two-year-old over for a 5 hour surgery.

I had exactly 25 minutes to talk with him before I had to jet off to pick-up the girls from school. Luckily when I placed the call, his secretary put me right through to him. The Surgeon’s voice was clear and calm. Too nervous to even think, I told him that I didn't know what questions to ask. Thankfully the kind surgeon launched into the details of the procedure. Details that have been haunting me ever since.

I had always loosely understood the Fontan. It's the last of three surgeries most single ventricle kids have in order to correct their circulatory system. It’s all about circulation and pressures in these kids. Keep the single-ventricle heart buoyant and don’t ever over-work it, and they will live long healthy lives. As a way of 'paying it forward' while also paying thanks back to the thousands of others before Luna; I had volunteered our daughter for a research study during her Fontan. The study was to determine if two medicines increased recovery time. The results to be published in the very prestigious medical journal aptly titled: Circulation.

In short, the Fontan is required to get the blood flow down to the lower extremities. As Luna stands now, her legs are getting recycled blood-mostly because of gravity. If you look at her little toes, they are indeed quite blue (and cold). So cyanotic in fact, that she thinks that she fashions blue nail polish on her toes. To which I simply keep pretences up, "yep Lu, Sienna has pink nail polish and you have blue!"

What I didn't realize about the Fontan, is that of the three operations these heart warriors have (the BT Shunt, the Glenn and the Fontan), the last is considered true open heart surgery. With the first two, the chest is opened, and the heart is exposed, but mostly the doctors are rerouting arteries around the heart. In the Fontan a 'baffle'-which is a GoreTex mesh-type piece of material-is affixed to a room of the heart. The synthetic material is then used to create a channel inside the heart, one that connects from the vena cava to the pulmonary artery.

And here's the part that nearly caused me to pass out: in Luna's case this will not be a straight forward Fontan. Because of her dextrocardia, her heart will have to be shifted and rotated to where a 'normal' heart sits in order to gain access to the room of the heart called the atrium. (Funny that word should have a double meaning; one that involves the intricate design of an architect, the other, in the case of Luna, involves a crucial piece of a heart surgeon's intricate design). Luna’s atrium, which is where the baffle will be affixed, is not assessable without moving the heart. Because her heart is rotated in her chest-a near perfect mirror image from yours or mine-this means, in clearer terms: Her Heart Will Be Moved Significantly During Surgery.

I'm weak just writing about it.

So I asked the surgeon the ridiculous: “will her heart be placed back to where it was?”

“Yes,” replied the kind surgeon, “we like for the organs to stay where they were, or where they want to be, which in Luna’s case is rotated, and on the right, and protruding slightly in the right chest wall.”

This is true, Luna’s heart can be felt quite well if you pick her up from under the arms-just under her right arm-a fact that has disorientated some of her care takers.

Then I asked another ridiculous question: “Can her heart move after surgery?"

“No,” The Surgeon replied.

Phew, check that off my list of anxieties.

The Surgeon assured me that with many single ventricles, the heart is often dextro, and has to be moved to gain access to the atrium.

The entire surgery will take up to 5 hours and is broken down into these parts:

1 1/2 hours to get lines and Luna anesthetized and stable for surgery.

1 hour to remove scar tissue from last surgeries.

1 1/2 for actual surgery, during which time Luna will be on the lung and heart by-pass machine.

1 hour wrap-up.

But none of this happened. Instead Luna underwent an hour and a half of anesthesia for a five minute procedure to implant ear tubes.

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