Sunday, May 30, 2010

Fontan Day 3 (Boredom sets in)

We’re officially over the hump of the Fontan surgery. Luna is recovering nicely-actually she’s ahead of schedule. The only thing we have hanging over our head is this little pacemaker issue. During surgery, as soon as she was settled into her to anesthesiac sleep, her heart beat went into a junctional rhythm. Basically this means the heart fires its beat off from different parts of the organ, when it should come from the atrium. In people with two ventricles this is no biggie. But with one ventricle, there are no liberties; the single ventricle people get put on a pacemaker-and fast. For now, however, Luna’s heart has settled back into a normal rhythm-which is a good thing.

Oh, and did I mention her surgeon now thinks she has a left ventricle? For the last year, she was determined to have a right one, but she’s switched teams again, this time playing for the left.

Now it’s boredom. And tedium. The most exciting thing to happen around here is shift change-which happens at 7am and then again at 7pm (these nurses really deserve a special place in heaven…seriously…they’re like angels on earth).

But boredom is much better than the nightmare we experienced the first night, just after Luna’s surgery. They always tell you after everything is OK, just how bad it got for a while. “Rocky” is the word her doctor’s use for her somewhat exorcist-like behavior just after surgery. No fewer than twelve doctors were in the room-several giving a running commentary on what medicines to add, what to pull. All the while Luna cried, bucked, reached, and grabbed for me; even under all those sedatives and while attached to a net of lines; giving the impression of a small whale fighting to escape a messy trap. Witnessing her powerful spirit and will to live was nothing short of incredible.

So, I leave you with some photos. As you can see Luna is uncomfortable, and bored. And she hasn’t moved since 7:30 Friday morning. And she has IVs in her feet (her wrist wasn’t having it), so she can’t walk now even if she wanted. But next week at this time, (knock a big ole piece of wood), she’ll be home, or maybe even on the playground with her sister.

Friday, May 28, 2010

And so it begins. (Fontan)

Luna looking like a day at the beach the day after her surgery.

Yesterday Luna had her Fontan surgery. We had just been here about a month ago. The Architect and I once again rose at pre-dawn and precariously lifted Luna out of her crib and gently slid her into her car seat for our drive into Boston. We know the routine now. First it’s to Admitting for a 6 am arrival where Luna gets basic vitals taken and NPO status (when did she last eat solids, milk and clear liquids). From Admitting families are taken back to the pre-surgical holding areas. Tight spaces with beds and TVs and two chairs, separated by curtains fashioned from cheap fabric in geometric patterns.

The holding areas are a surreal experience. It’s there you wait for your child to be taken from you, so in our case, they can perform a six hour open heart surgery-in which they will move your child's heart (this detail haunts me, if I keep bringing it up, it’s because I want to desensitize the thought-like how one does from repeating any word fifty times over so it becomes meaningless, almost silly sounding). But luckily The Architect and I were kept busy simply trying to distract Luna from her grumbling tummy, so we had more immediate issues at hand.

After a short wait, anesthesiology came in and administered Katemine-also known for its street name of Special K-to the kids including, of course, Luna. The idea behind giving this powerful narcotic is to make it easier for the kids (and the parents) when it’s time for the doctors to take the child back to the OR. All the children in the holding area, and The Architect whose job it is to compute such things, estimated there were about 20 beds, which meant there must the same number of ORs-were given the happy juice. Within five minutes the mood changed drastically, the holding area was aflutter with children laughing and snorting, and for a moment you could almost pretend you were in a matinee watching Shrek. Luna reacted no differently. Within five minutes of swallowing the vial, Martha Speaks suddenly became the most hilarious thing the child has ever seen.

Once Luna was good and loopy, the anesthesiologists brought her back. She protested a bit, so Paul carried her to a place where she’d get to breathe the "happy strawberry air”. (More trippy drug references, I personally worry about future drug dependence problems for these heart kids than I do about the heart function itself).

The surgery was long-from the time Luna went in to the OR till the time she was wheeled out was about seven hours. Then it took another hour and a half for the team to clean and prep her for the ICU.

When Paul and I arrived in the ICU, she looked like this.

We’ve seen Luna like this so many times, we’re becoming numb. It’s almost like a fear of flying I just kicked for the same reason; the more you do it, the more you become desensitized. Public speaking is exactly the same way. Virtually any fear or phobia, from flying to public speaking to watching your child endure one invasive medical treatment after the other, can be mastered with sheer habit.

So seeing Luna with all the tubing wasn't difficult. It was the drama that unfolded next that was.

Some of you may remember this post I wrote on Luna’s “I do it” nature. Well, even under “enough sedatives to knock an elephant out” (direct quote from her nurse), the little stinker still would not quit. Luna wanted out. With two drainage tubes protruding directly from her heart, a breathing tube jammed down her throat, a catheter, and IVs coming out of each foot, her jugular vein and probably places I didn’t even detect in the tangled mess, the child thrashed and pulled and yanked and heaved to get up from under all her equipment.

Even her surgeon stayed on board to gently hold down her arms.

Finally, Paul and I were asked to leave. My motherly instincts told me it’d be better if she didn’t feel my presence, as all of us moms know, our children behave the worst for us.

Today when we walked in, the storm had passed, and Luna, though still somewhat constrained, dozed in and out in front of Curious George.

Her nurse told me later they had to administer something called a ‘Kamikaze Wean”. This, in short, means Luna got her way; that big ole breathing tube came out real fast last night.

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.