Two weeks Ago Today (Fontan)

It's hard to believe it's been two weeks already since Luna's Fontan operation. It already seems like a life time ago. The feeling is not unlike carrying around a heavy and impressive tome, and one you may not always be up for reading, but must do so, in order to move on to the next phase of life. We've just finished the last chapter. We feel collectively lighter as we put the book away on the family bookcase, where it will sit, hopefully for years, before we'll need to make amendments. Luna's Fontan, the last of her three open heart surgeries to correct her circulatory system, was completed two weeks ago. Her follow-up visit to cardiologist was all smiles. Her team was beaming as soon as they read her echocardiogram. And her sats? Pretty darn close to mine at 95. I'm telling you, this kid is magic.

I thought it would be fun to show photos depicting her speedy recovery.

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The Big Step Down. Regulars at hospitals like ourselves love this phrase. It's the first step towards breaking loose. Big sister Sienna benefited the most from this transition.

Time for Pet Therapy! A visit from Copley both excites and soothes the young patients.

Hospital bed mates get dressed for the big occasion. (Shhh, don't tell Sienna she's not a patient).


These next two photos are from the Portsmouth Chowder Fest, and were taken just one week after Luna's surgery. One week! She was on the heart and lung machine just one week prior!




I highly recommend taking the recipient of a major operation straight to the salon upon returning home from the hospital. And adding pink to the recent patients hair is always a good thing too for making one feel glamorous again.



On Wednesday Luna wore her Sunday best for her big sister's end of school year Tea Party. Isn't she lucky to have such tiny and dainty feet?!

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.

Luna’s Stage Three Open Heart Repair has been scheduled.

Luna at Panera Bread on her 2nd birthday; where she ditched her kiddie meal in favor of Mama's Broccoli Cheddar soup.

I had planned on posting about Luna’s 2nd birthday and her subsequent wellness appointment with her pediatrician when I got The Call from Children’s Hospital Boston.

If you ever wondered how these surgeries work; a liaison from the cardiac department calls and gives you the dates and logistics of your child’s upcoming appointments.

We had known all along that Luna would be going in for her sedated echocardiogram and (exploratory) cardiac catheter. What I didn’t know is that her Fontan surgery-last in the series of three surgeries to repair single ventricle anomalies-would be scheduled the Monday after Luna is discharged from her catheter.

So, this is what we’re looking at:

Wednesday, April 28th we’ll arrive at the brisk hour of 7:30 am to Boston for a day of catheter pre-tests, blood work, chest X-Rays and an EKG.

The next day Luna will undergo two exploratory procedures so her medical team can acquire two-dimensional and three-dimensional photos and live footage of her heart and arteries, both from the inside and outside of her body; these being the catheter and echocardiogram. For these procedures the young kids are fully anesthetized (there’s just no reasoning this kind of procedure to a two-year old-and adult can lay still for hours on end, not so much with a toddler).

Because she will be under general anesthesia she will stay the night for observation and be discharged the next day; Friday April 30th.

And here comes the surprise: Luna will then be admitted Monday May 3rd for her Fontan surgery.

It should be noted that the Fontan doesn’t pose any greater risk for her than either of her prior surgeries. The recovery is expected to be about a week. While the age of the Fontan kids (typically two-to-four-years-old) is better than the earlier surgeries in some respects (bigger, stronger, immune system has had time to beef-up), we’re still talking toddlers here. And just their developmental age-the stubborn phase-can keep them in the hospital a day longer. (for a good and easy-to-read-and-understand written description on the Fontan, click here.)

When I asked Luna’s cardiologist if there was any risk with having the surgery right on the heels of the catheter, she said “absolutely not.” Logistically it can be easier for the families as well, which can be summed up like this: let’s get this done and behind us-and all at once please.

There is a chance the surgery could be pushed back a week or so; and that depends upon who her medical team is made up of. Her lead surgeon and one of the most seasoned and senior of the cardiac department left to take another opportunity at Columbia Hospital. But thank goodness we’re talking Children’s Boston here, so there are a handful of other just as senior surgeons who will operate. (The rarity of her anatomy, especially her dextrocardia and ‘mirror imaged’ heart placement can and does keep even the senior surgeons on their toes-but I imagine because of her ‘uniqueness’ she does draw top talent who come across such special anatomy only a handful of times in their career).

So, for now it’s a go. Luna’s primary cardiologist here in New Hampshire will get back to us on who Luna’s dream team will be; and from there it’s on to the next leg of the journey.