the post-hospital rant

When Rhys was born, the midwives looked at him and saw tell-tale signs that he was early – his fingernails hadn't made it to the end of his fingers yet; his nipples hadn't yet popped out; his ear cartilage hadn't hardened all the way...They had a list of checkpoints, none of which I would have likely noticed at all.

What I can tell you is that when Rhys was born his skin was so soft it felt like water. He felt too delicate even to kiss. Though we are fond of possessive pronouns, I would not have described him in most any way as “mine.” I doled out my kisses sparingly, with just the slightest brush of my lips against his cheek. Anything else would have felt disruptive to some sacred process that had yet to complete itself. One must show respect in the presence of miracles.

Even by two weeks old, the magic aura had waned a little and that creamy, liquid skin was already beginning to feel somewhat earthbound.

Home from the hospital, he felt untouchable all over again. Not mine. Though the place he'd been delivered back to me from did not ring to me of magic, here we were at another beginning.

****

Children's Hospital has more than a little in common with an airport for me. There is the bustle and noise in the lobby (which includes a CVS pharmacy, an Au Bon Pain cafe, and an art gallery), with people from all over the world coming and going. The timelessness of your stay and staleness of the air. The luggage carts in the parking garage are simply exchanged for wheelchairs. And there is the sense of entering someone else's world. Journeying in a way that you must trust rather than understand, that you no more have the jargon to ask about than you would have ability to take in the answers if they came, and they rarely do.

As you approach Children's Hospital Boston in the busy Longwood area of the city, there is a banner – utterly enormous – hanging under the name of the place: “Ranked #1 by U.S. News and World Report,” it screams. All of the “Mission Accomplished” banners were taken, I guess.

“You must be so grateful to be so close to the best doctors in the world!” I've heard this constantly since Rhys' diagnosis.

I waited, tempered in my exuberance for western medicine, even the kind that's splashed as big as thunder clouds at the entrance to greatness and “Ranked #1” by a news source that – in this time of hyper-specializations – also ranks cars, law firms, mutual funds and places to retire, and lists the “Five Great College Towns for Winter Enthusiasts” and the “Top 9(?) Political Events of 2011.” Color me conservative.

Essentially, Rhys' surgery was a success. And I am grateful. As I am grateful for many things in my life, such as the fact that I don't live somewhere where I need to hike miles every day for water and carry it home on my back. However, that does not mean I don't have the right to complain when I turn on the faucet in Northampton and lead comes out.

I feel no cozier now with the idea of doctors and hospitals than I ever did.

Perhaps if they were our “last chance,” if I didn't have a beautiful, mostly asymptomatic baby whose condition I had to intellectualize to visualize the danger of. But no, probably not then either. I can't. Sorry. My knees will not bend at the altar of Children's Hospital. The people I met there ranged in skill and sympathetic natures with the same curve as the population at large. A couple were exceptional, most were average, and a few sucked weenies. The information that the doctors left out of our conversations still galls me. This lack has followed us home in our less than straight trajectory to recovery; they like to label things after the fact that “happen-all-the-time” (so why don't you mention them once-in-a-while??). As I wrote to my surgeon, if only information flowed with as pathological regularity as the medical protocols do.

We all have our preoccupations. I tell people that once we left ICU, our roommate was a 5-day-old with a pacemaker whose mother spoke only a little English. They say “Wow! Isn't it amazing what they can do now!” I watch as they call for the interpreter, who is slow in coming, turn over again on my crappy cot that I shudder in thinking is all they provide a woman who just gave birth.

We meet doctors at our most vulnerable. Whether that is dressed in a backless, paper gown in their examining room, or curled, sleepless and unshowered at the bedside of our infant. For their part, the surgeons, who I'm thinking arrive to the hospital via underground tunnels like the members of Congress, likely also frequent phone booths placed discretely on various floors – in order to smoothly change between their suits and their scrubs. They are calm, assured, at work. You are not.

They had told us to plan for a hospital stay of 7-14 days. Expect 10, our cardiologist told us, offering the midpoint as a goal. But we were out in record time. Rhys plowed through all the checkpoints like a prize fighter. Surgery was over around 1pm Friday. The ventilator came out at 4pm on Saturday. The chest tube was gone Sunday morning. Two nights in ICU, two nights on the regular floor. Boom. Done. My baby kicked some medical ass.

I had planned on writing holiday cards, sewing more of the patched, felt hearts I'd been creating to keep my mind out of trouble, listening to This American Life, the long list of distractions goes on, while my son languished in bed sedated. None of it came to pass.

The beginning was incredibly tense and intense, facing the wires, the tubes, that tiny body covered in artificial bits all taped on with horrid adhesives (“Does he normally have this sensitive skin?” Gee, I don't know since I don't normally cover my son in duct tape!!), as the nurse listed the medications that were seeping into my baby in between her other proclamations of expertise (“I was actually in the operating room for Rice's surgery; so that was really cool.” Look, sweetie, you already said that and I was unimpressed the first time. Surgery is not “really cool” and I didn't name my kid “Rice!” Now shut up about the OR and tell me when he'll be off the fucking morphine!)

After encountering a few much more reassuring nurses, (one who even triumphantly advocated for me to get him back to nursing ASAP, skipping the steps of sugar water and bottle) we left ICU and headed to the regular ole cardiac unit. With a broken call button, another rookie nurse and a night crew that were apparently busy elsewhere for the duration, we barely had time to get through the gas pain that sent Rhys screaming awake multiple times that first night, fight off the second sedated echocardiogram and an extra Xray, and host the parade of hospital personnel that swing by (“I'm a nutritionist,” “I'm from lactation,” “Would you like to speak to a social worker?” “I'm the nurse practitioner on duty today,” “I'm a neurological behavior specialist,” “You qualify to participate in a study...”) before we were discharged.

In many ways, the hospital held many similarities to my labor with Rhys – it was over exceptionally fast, which, overall, was a positive thing. However, as my midwives said at the birth, you still have to go through everything, no matter how fast it happens. You're left kind of dizzy and definitely exhausted. And, frankly, there was no time to process. Forgive me if I must do that here.

You'll be happy to know, however, that according to my friends at Children's apparently none of the medicines, even the ones that are so routine they forgot to list them in the OR report, have any side effects! Ever! – AMAZING! And, I was also told –so it must be true (Children's Hospital is ranked second only to the internet in true facts, I'm pretty sure - “Ranked #2!”...) --that each and every situation that arose was, as they liked to put it “perfectly normal.” I tried to assess this most bizarre of all medical terminology while surveying my baby lost in a sea of machinery, IV lines in his hand, his foot, his neck, monitors taped to his forehead, a breathing tube down his throat, two catheters – one dripping urine, the other blood from his chest...and all I could think was that, as inviting as that CVS in the lobby is, as intoxicating as the Ranked #1 banner must feel as they swish by it on their way to their blessed jobs, as fun as it must be to eat lunch every day in that basement cafeteria laced in high fructose corn syrup, these people seriously need to get out more.