Monday, January 02, 2012

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.


Daryl Edelstein said...

Pretty much the same experience I had last February when my husband had back surgery on Weds and open heart surgery the following Monday ... someday I should show you the letter I sent to the head of St Luke's Roosevelt Hospital here outlining day by day the screw ups and inattentive nurses/interns who inhabit this teaching hospital .. and the reply I got .. lucky for me my BP rises and falls quickly or I'd have stroked out and been admitted after reading it

Gina said...

Wow. What a story. I hung on every carefully placed word. Your writing is amazing. I felt almost there with you in spirit.

I'm so glad you are all home together. Rhys will make it through this new beginning as well as he did being born and in the surgery.

Sending you good wishes and love. Would love to see you guys this winter. :-)

DeVona said...

Similar hospital experiences abound - as I stood by my father as his vigor waned, after an untimely fall landed him in the hospital for nearly a week. Is this kind of hurried care universal? Nurses were so intent recording Dads statistics, drawing blood, taking vitals,etc,that basic care was overlooked, and may have contributed to his death, hours before he was to have been transferred to the vets home (where he may have received better care)Why was it up to me and not the nurses to realize two days in a row, that his oxygen mask did him no good because the tubes had been disconnected to the wall when his bedding was changed... Or that an inexperienced or bored nurse fastened his leg compression units too tight that resulting in swollen feet and a shivering, shuddering upper body? When I was alerted that they put him on a breathing ( c-pap?) machine it was just a set back, and the nurse told me I didn't have to come back to the hospital, she didn't want me to be mad at her- I'm glad I ignored her advice, because I got to hold Dads hands as he passed. I regret his last hours were confusing and uncomfortable ( the machine that forced air into his lungs seemed to be harsh and highly uncomfortable)Hospitals are indeed scary places, necessary, but so removed from decent compassionate places that all patients deserve...I'm glad your child got through his hospital experience....sorry I ranted, it's been festering and I'm still dealing with overwhelming grief, even though my Dad was elderly ( which may be another reason he seemed to be on the bottom of the totem pole as far as care and attention was concerned)

Kitty said...

Thanks for reading. Daryl, I'd love to see that letter - I think of sending my own but not sure...
Gina, thank you! And I better see you this winter! ;-)
DeVona, I'm so sorry that you went through that. Something is surely broken in the system. Rant any time.
I am glad to get these responses - I hesitated (and delayed)posting something like this, wondering if people might just be put off and think I was an ingrate with nothing else to do but complain.
Hoping to have a minute to write again soon...Mr Baby doesn't like naps so much. He's an awfully happy little dude, though; I'm lucky.

Susannah said...

Your story, Kitty, and everyone's comments move me, and remind me of the tremendous gulf between those providing medical care, and the patients and families on the receiving end. I am so glad that Rhys was able to leave the hospital so quickly, although I can really appreciate the comment by your midwife that you still have to experience it all, just faster. I appreciate your sharing, ranting, and your gratitude. And I also love your gift of seeing, and being able to express, the miracles, and all else. The description of Rhys' soft, water-like skin is beautiful in its ability to convey that delicate and ethereal aspect of his physical presence shortly after birth.

Anonymous said...

I just found your blog but I will be back for more. Love it.
I share your feeling for doctors and hospitals 100%.
The only hospital that I felt "got it" was Cleveland Clinic. My daughter had to have emergency surgery there at 14 months old and it honestly was awesome. The nurses actually treated her (and us) like intelligent human beings. They encouraged me to nurse her for soothing before and after surgery, let me to stay holding onto her in the OR until she was under anesthesia, and treated her with utmost care and tenderness. I felt informed, respected and cared for: a person, not a number. I went in a cynic and walked out pretty darn happy, not something I can say often I deal with the medical establishment.

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