Showing posts with label Post-cardiac catheter exam.. Show all posts
Showing posts with label Post-cardiac catheter exam.. Show all posts

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?”

Thursday, April 30, 2009

Life is Blue-tiful!




The day before yesterday, when it was 90 degrees in April, in Northern New England, I took the girls to Luna's follow-up cardiology appointment. This was her big follow-up appointment to see how well the catheter worked. Maybe because both the girls are getting older-a full year older than when I first started bringing them-(and I always have both, mostly because I don't want to pay to have our beloved babysitter take Sienna, but also, these girls are two peas in a pod; neither one likes especially to be with me alone). Now that the girls are 13 months and 3, not 3 months and 2, it's almost getting....dare I say fun?

Due to the sweltering weather, I had brought the girls to the beach in the morning and as beach time goes, I happened to look at my cellphone while they made sandcastles, and realized it was already time to leave. I quickly dragged the girls off the beach and whisked them to Dr. G's, sandy bums and all.

Luna suffers through her appointments. She has been poked and prodded her entire life, and whenever someone starts to bring a stethoscope to her chest she screams at the top of her lungs. It's interesting to me that doctors can even hear what's going on inside of her, let alone listen for a dull heart murmur.

But not this time. Luna cried a bit. But once we got her settled down on the exam bed, in the darkened room with Happy Feet on the big screen-she sucked her bottle and giggled at the silly penguins on the screen. This meant that the echo, that normally takes over an hour, only lasted about 15 minutes. And because we didn't have all the screaming, squirming and hysterical gag-crying, Cindy, the sweetest echo reader in the world, got amazing shots.

The prognosis? Luna is looking great. The balloon dilation of her left pulmonary artery worked beautifully (to quote Dr. G). The run-away blood vessels, those are all gone, and best of all her heart function is perfect.

Dr. G and I talked about the road ahead. Right now Luna's sats are back down to the low 80's. This is fine and where we want them. Once she starts getting really mobile they will drop a bit, and yes, she will get blue. As Dr. G put it, 80's blue is somewhat undetectable-especially to the untrained eye. But 70's blue is blue. Like standing in the grocery aisle-your-kid-looks-awfully-blue blue. But fear not. This is normal. And all part of the plan. For the next year, up until Luna goes in for her last repair, that of course being the Fontan, the child is going to look rather indigo.

I say blue is beautiful. I declare Blue Is The New Black. Don't hate me because I'm blue-tiful. You get my point. The worst part will be for me, having to explain to mere strangers why my child's lips are purple.

Luna's vein in her neck will also become more noticeable as she grows and her body thins out. This is because her vena cava-the big ole vein coming down from the brain-is routed straight to her pulmonary artery (thus the Glenn Operation). So if you see a blue-ish child with a bulging vein in her neck, don't fret, it's just my child, pre-Fontan. I have the same mega-vein and I didn't even have the Glenn. Luna will match Sienna, who also has the 'neck vein'. When the older child has a toddler tantrum, her jugular jiggles and bulges, displaying a mini tantrum of it's own.

The other tidbit of information we learned is when we fly, Miss Luna will need to wear oxygen. Cabin pressure is not kept to normal-sea-level oxygen levels. Basically it's kept at an altitude equivalent to standing on a really, really tall mountain. The result? All of our sats drop. So if you were to slap a monitor on every index finger on the plane, everyone would read in the 80's rather than the high 90's where most folks hang. This of course explains why one Dixie cup of wine feels like you just drained the entire bottle-by IV-in 5 minutes. So, because of the already dropped cabin pressure, Miss Lu will have to wear oxygen when we take our first family trip as a foursome to Jamaica. The Architect, along with a few friends, suggested why can't Lu simply activate the drop down oxygen masks. This struck me as really funny and immediately conjured up scenes from the classic movie Airplane where Vicky from Love Boat is sucking in her cheeks, making fish face because the cabin pressure had dropped so low. We don't want Luna to suffer fish face any time during the flight, so when we check our baggage and make sure all our shampoos fit into a zip lock, we'll also have to 'clear' the oxygen tanks with customs. THAT will be the really fun part.

But we've got plenty of time before January. The entire summer is before us, and not.a.single.cardiology.appointment.till.August. (!!)