Saturday, April 24, 2010

It's all in the routine

One of the most difficult things about getting your child through a significant surgery, or even a cardiac catheter-a procedure that requires just one night in the hospital-is trying to get the family Back On Track afterwards.

Tuesday morning Luna underwent her catheter. In the doctor’s words, “she looks as great on the inside as she does on the outside”.

Luna and I were at the hospital exactly twenty-five hours. This is nothing in the grand scheme of things. Yet somehow a mere twenty-five hours in the hospital can pull you under and whip you around in the rip tide of domestic upheaval; leaving you gasping for breath trying to keep up with the laundry and dishes that seemed to accumulate, somehow even in the family’s absence. Thursday morning I woke-up in my own bed; grateful and full of fresh perspective once again. As I took in my first cup of coffee, I scanned the house which seemed to glare at me back, resentful that I had left it in such an unruly state. From there the anxiety seeped in.

Since giving birth to Luna I’ve had dozens of conversations with other mothers, many of whom have endured some hardship themselves; a loss of a baby, a sibling, a pregnancy, or God forbid, two or three pregnancies, giving birth to chronically ill or still born babies. The pain and the loss is everywhere. And strangely, or not so strangely perhaps, once one endures a Difficult Thing of some kind, one seems to draw in other people who have too.

“I’ve lost a lot of people in my life”, a colleague said to me recently over a mid-afternoon business lunch.

I’ve noticed each of these survivors, all women in this case (perhaps simply because men just don’t talk like this), keep sane with strict domestic regimens.

One such woman lost a baby at three days old-on Luna’s birthday-on the cardiac floor at Children’s Hospital Boston (my mother’s coy smile immediately comes to mind here, “there’s no such thing as coincidence”, a statement I heard over and over growing-up).

In the morning when I would drop-off Luna in the room where she worked, she and I would compare home regimens.

“It can be 4 am, if someone get’s up, their bed is made right there and then.”

Her statement looped through my mind for weeks after, somehow bringing me satisfaction each time. “This is how we do it”, I thought to myself.

Another mother and I were commiserating over how when our husbands hang around the house, as is the case now with the newly minted Out of Work Architect, they crimp our style. While swapping survival tactics in the school parking lot, she confided in me,“I line dry all of my clothes, but I can’t have a single article of clothing hanging on the drying rack when we go to bed at night.” I nodded in agreement. I understood, completely.

These women all brought me comfort with their domestic must-dos. It’s how we cope. When the Architect washes dishes (inexplicable to begin with, we do indeed have a working dishwasher), without putting the pile of clean dishes away that he’s stacked like precarious Legos on the counter, it feels like nails being run down a chalk board. But after collecting other stories of Regime and Order from mothers, I felt better about my own frustration.

Perhaps now it won't sound so strange that the first thought upon rising in my own bed after Luna’s twenty-five hour stint in the hospital was, “how can I put this house back together?”

Saturday, April 17, 2010


Yesterday Luna and I ventured into Boston for her day of pre-cath/pre-Fontan labs. The day was long, the traffic crummy, the weather crummier.

But the doctors, nurses and other specialists at the hospital always make it right. This time, just as we were leaving, a woman came rushing into the waiting room. In her arms, boxed toys were piled high above her chin. Luna managed to grab a Little People Pirate set just as we were leaving.

Luna had X-Rays, blood work, EKG, weight, height, vitals and blood oxygen saturation's, AKA sats, taken. So far, everything looks fine.

But mysteriously her sats are up. WAY up. Luna, very gingerly and sweetly offered up her index finger so the cardiac assistant could fasten a tiny sensor on her appendage. Luna held her hand perfectly steady, and immediately the blood saturation meter took it's read. A steady '94' glared on the machine. There are people out there, who have zero heart issues who might read that. The most anyone can read is 100.

The 'sats', probably more than any other vital, is what keeps us heart parents on our toes. Dropping sats and in for a cath our kids go. High sats, and in for a cath they go.

The catheter fellow I spoke with thought that perhaps she had a venous collateral. Collateral are like streams. The body, in Luna's case, with it's tricked-out circulatory system, gets hungry for oxygen. The result is tributaries shoot off the main veins, and shoot up to the lungs, or sometimes down into other organs, in effort to give the body more oxygen. But really it's not effective, and if we let all these collaterals jump ship off their main rivers, the entire body and all it's organs would not be supported.

I asked the cath fellow a hypothetical question: if Luna's sats are high enough, why even move forward with the Fontan? He explained that the body would be fine with partial circulatory; as is Luna is now, but after say 10 years of this, one would run the risk of stroke, or maybe even death. One main reason, that her lower circulatory system skips her kidneys, which is a natural filter for things like small clots. Blood clots, even those that can only been seen under a microscope, can still cause a lot of grief. Stroke probably being the biggest risk.

Come Tuesday we'll find out if any rebel branches have shot off the main rivers to find recluse on other parts of Luna's body. Luna is 'first case', which means we only have to starve her till 7:30 am-at which time, baring-and fingers crossed-no emergency case bumps her out for a later slot-she'll be given the 'happy juice' before she is brought back for the 3-4 hour procedure. If the doctors find any pesky collaterals, they'll be given a good blast of heat-where upon they will recoil into their submission, bringing Luna's circulatory system back to it's pre-Fontan normalcy.

Thursday, April 15, 2010

I Do It!

“I do it!”

"I DO IT!!”

It’s what comes out of Luna’s mouth, oh at least 99 times a day.

The entire dynamic of our house has shifted. It’s damage control; all day, every day. Even Sienna, our four-year-old is part of the clean-up crew.

In a matter of just a few weeks, Luna has crossed over into the Terrible Two category. With two capital “T’s”.

Inside I’m actually relieved. Relieved because the terrible two’s are all about autonomy; and Luna, through her tantrums, is demonstrating some serious intent. At barely three-feet-high, she cannot negotiate the world like her parents and older sister. And this makes her angry. Fuming mad. And frustrated, and finally sad. The most mundane of house hold tasks-like turning on the TV-usually ends with Luna in a puddle of tears on the floor.

From the moment Luna wakes-up, until I man-handle her into her crib at night, every task at hand is I do it. (Yes I wrote man-handle. Luna is an expert climber, shaming the deftest of any monkey out there. But she hasn’t been able to figure out how to climb into her crib; an event that requires me to wrestle her in, against her will)

Height seems to be a thing for Miss Luna. She desires to experience life from the highest perch she can find. Usually in the morning, this is my antique dresser that is over 4 feet tall, where, in a short visit to the bathroom, I will find Luna sitting proudly on top. In the case of this morning, I found her eating a bowl of cereal with a mischievous grin. (honestly, I’m not sure how she got the bowl up there-in tact-with no spillage).

So, my new worry is how this very spirited, rebellious, strong-willed little girl is going to take to being bed-ridden for a few weeks.

Can we suggest a steady dose of sedatives?

I worry too, because this child gets even ANGRIER if one curtails her efforts to “do it” herself. Last night she wanted to show Daddy how she ‘pees’ on the potty. The Architect isn’t clued-in yet on how to handle this. Luna MUST sit on the big potty, and only has me hold her because she’s already fallen into the basin (that was a good start to the morning). Well, The Architect tried to convince her that the little potty is for her. Her retaliation was to bite him with all her might.

Tomorrow starts our journey through Luna’s cardiac catheter and Fontan. We’ll arrive to Children’s Boston at 7:30 for a day of pre-testing. I’m hoping Luna’s desire to charm others will be stronger than her will to do things all by her big-girl-self. We’ll have X-Rays, blood tests and EKGs to get through. All of which require our New Two to sit still.

You can bet that I'll be holding my breath. My planned mantra for the day, borrowed from Luna, “I (can) do it!”

Tuesday, April 6, 2010

Single Ventricle Alphabet Soup

When we first learned Luna’s heart was composed of just one ventricle, the only information I could find on her rare anatomical condition was for Hypoplastic Left Heart Syndrome (HLHS). Because of her unusual heart, bi-weekly echocardiograms at Children’s Boston became part of our regular pre-natal care. And each appointment, where I would sit in a darkened room for close to an hour and a half, while the cardiologist circumferenced my globe-like belly with a forceful probe; I would ask him, “but this baby doesn’t have HLHS?” Kindly, patiently, Dr. Brown would answer my anxious and continuous inquiries the same way each time: “No, this baby’s heart does not fall into the HLHS category of single ventricle formation.”

A recent blog post brought in several comments, many from other heart moms commiserating with me; welcoming us to their pack, Luna is HLHS too, they cheered.

But actually, Luna is not HLHS; she falls into her own unique category for single ventricle kids. Her own acronym still somewhat up for debate, but most professionals have settled on DORV/DIRV-or Double Outlet Right Ventricle/Double Inlet Right Ventricle.

I decided to ask Luna's New Hampshire cardiologist, Dr. Gauthier (Luna has two cards, one in Boston, and one closer to us in NH) for, oh, about the twelfth time how Luna differs from the HLHS kids. One of Dr. Gauthier’s biggest gifts to her patients (or in our case, to the parents of her patients) is her ability to craft the complicated and complex world of the various Congenital Heart Diseases into easily understood metaphors.

This is what she wrote:

“Luna best fits into a ‘single ventricle’ category. This is what it sounds like- for all intents and purposes, she did not divide her heart into two ventricles, and instead of one or the other ventricle being hypoplastic (small), she only formed one (her right), with both internal valves (mitral and tricuspid) entering into this chamber, and both outlets (aorta and pulmonary artery) arising from this chamber-- that is, it would have, if she had formed two outlets. Instead, she formed only one outlet valve, the aortic valve, and the other, the pulmonary valve, was "atretic"- like a door sealed shut- in her case, so poorly formed that it could not be pried open in any way (which can be done in some cases) but instead they had to find a way to surgically bypass this. So she fits into the "double inlet, doublet outlet right ventricle" category complicated by "pulmonary atresia.". This translates to a single ventricle accepting all inflow and pumping all outflow. To make things more complex, her heart formed pointing rightward instead of the normal leftward location, so she has "dextrocardia." And then last, her aortic valve did form, but instead of forming three leaflets, she has only two leaflets opening and shutting. This is the "bicuspid valve". The only significance to this at this stage is that it makes a little clicky sound when it opens but otherwise it works just fine.

HLHS and HRHS are different anatomically and the importance between those two as well as Luna's "single ventricle" version is in the way it is repaired and how much work has to be done to get the blood to flow out to the body. Luna is on the better end of the spectrum compared to HLHS on that front, although similar in that she really only has a right ventricle doing all the work to pump to her body. HRHS has the advantage in that the ventricle that does the pumping is a left ventricle, which is better designed for that purpose, but all three only use one ventricle to pump to the body and the blood is re-routed surgically to drain passively into the lungs (in other words, all three usually wind up with a version of a Fontan, but with varying types of surgery to get the blood to flow to the body and to the lungs).”