In the lobby of the hospital on Broadway, way uptown, is a giant contraption encased in Lucite. It’s so mesmerizing that even if you’re late for an appointment, you feel compelled to stand in front of it and watch for a few moments. The contraption isn’t electrical but rather mechanical, made up of a series of wire tunnels with levers and catapults. Many large balls travel through the whole thing in crazy patterns, completely fueled by the construction of it all, not any outside force. As they roll down hills, drop through holes and even make their way in what seems like an impossible upward climb, they make a clicking and clacking noise that lulls you into a kind of daze. Children stand with their noses pressed to the Lucite, quiet, their parents above them, both rapt at the continuous rolling movement of the balls. Nothing every really happens and it’s hard to figure out where and how the whole thing starts. There doesn’t seem to be an end, either, just an endless clicking loop for the balls to travel on forever.
In January of 1996, we got a PET scan of Sophie’s brain. She was ten months old. The previous month when Dr. N recommended it, Sophie had already been on eight different antiepileptic drugs. PET is an acronym for Positron Emission Tomography. A website definition of the procedure says “positron emission tomography is a diagnostic examination that involves the acquisition of physiologic images based on the detection of radiation from the emission of positrons. Positrons are tiny particles emitted from a radioactive substance administered to the patient. The subsequent images of the body developed with this technique are used to evaluate a variety of diseases.” Dr. N said that since Sophie’s seizures hadn't been responsive to medical therapy, the PET scan of her brain might help to determine whether she would be a candidate for surgery.
The technology was still very new and rarely done. I remember that there weren’t even that many actual machines in the state of New York. Fortunately for us, though, Columbia Presbyterian Hospital, the home of Dr. N, had one, so we made the appointment. Nowadays, you can get all your information about any procedure on the Internet, but in the dark end days of the last century, the only information came from your doctor. Initially, the procedure was denied by our insurance company, but I was armed with enough information to fight for it. With a lot of perseverance.
“Can I have your subscriber ID number?” the agent asked when I called one morning.
Click click clickety click, went the keyboard as he typed in the information.
“A procedure for which dependent?”
Click, click, clickety click.
“Child’s birthdate, please.”
Click, click, clickety click.
“Procedure name, please.”
Click, click, clickety, click.
“I’m sorry, ma’am, but we’re going to need some more information about this procedure before we can give you an approval to proceed.”
“Like what kind of information?” I answered, defensively, because by now I knew the insurance drill.
“Like if the procedure is medically necessary.”
Medically necessary? I’m thinking. Medically necessary? No. We just want to inject our nine month old baby girl with a radioactive substance to see her brain light up and then maybe have the opportunity to cut into it for fun. Just kind of experiment with a cool new procedure. We’re hoping that you’ll pay the five thousand dollars for it.
“You’ll have to get your physician to write a letter stating that the test is medically necessary,” the agent repeats.
I guess I swallowed and agreed because a month later we are scheduled to go into Columbia Pres for the test.
When we arrived at the medical center, we were taken to an examination room that housed the PET scanner, which has a hole in the middle and looks like a really huge doughnut. It’s white. The techs administering the scan told us that first they would open a vein in Sophie’s arm through which they would later inject the radioactive substance.
“Where is the substance?” I asked.
The tech pointed down to the floor and nodded toward what looked like a huge vacuum tube attached to the wall. Above the tube, near the ceiling was an enormous digital clock with bright red letters.
“The stuff is in the basement?” I asked again. The tech is busy with a metal tray. My husband has the baby and places her on her back on the examining table. She is about ten months old and chubby; her wrist is just a crease dividing the baby fat of her hand from her arm. It’s here that they’re going to find a vein.
“Actually, yes. It’s sort of in the basement. It’s radioactive and made in a machine downstairs called a cyclotron. When we’re ready for it, we’ll let them know and they’ll send it up.”
While the tech is explaining this amazing technology, he is also busy patting the fat on Sophie’s little arm. He’s actually almost slapping her, trying to find a vein. There’s a rubber band on her upper arm and she is starting to fret. She’s used to needle sticks as the neurologist is always trying to get a blood level of whatever drug she’s on, but some people are better at it than others and this guy doesn’t appear to be one of them. I move over to the table and squeeze myself next to Michael who I always accuse of being too passive when it comes to blood sticks. He steps away because he knows me.
“I think you’d better try somewhere else,” I say.
The tech’s lips are tightly closed, and he releases the rubber band and puts it on her other arm and then starts slapping that wrist. He sticks the needle in, a moment when I always (ashamedly) wince and turn away, my body steeling itself for the scream. And Sophie screams, so I turn back or open my eyes and the tech is basically rolling the needle around under her skin. He hasn’t gotten it. I let a few seconds go by.
“Stop,” I say, “try somewhere else, please.” I’m bent over Sophie, trying to soothe her. She’s stopped screaming but is impatient lying down. I want to give her a break and ask for a second.
The tech says that we have to get going and starts working on the veins in her feet, then her ankles. Each time he does the slapping and then the stick and then the rolling and probing. At the seventh stick, I shout, “STOP!” Michael’s hand is on my back and he’s looking at me warningly because he knows that I’m about to explode. Which I do.
“YOU’VE GOT TO GET SOMEONE ELSE IN HERE TO DO THIS RIGHT NOW,” I shout. “It’s not as if this is a life or death situation.” I’m crying, now, enraged and holding Sophie in my arms. Michael still has his hand on my back.
The tech isn’t apologetic, just sweaty and bothered, but he goes to the telephone and asks someone to come up and help him. When the nurse arrives we find out that she’s from the NICU, used to sticking preemies and “good at it.”
We lay Sophie down again and the nurse gets the needle in the vein on the first try. We’re ready for the radioactive substance. The tech places the call to the folks in the “basement,” and when the big red clock clicks over by a couple of seconds, we hear this tremendous “whoosh” and watch him put on some enormous gray gloves and walk over toward the tube. There’s a door in the tube, a panel and it opens and the tech reaches in with his space gloves and pulls out a huge needle. It’s not actually all needle; it’s a regular sized needle attached to a syringe that is encased in some kind of protective material. So the tech gets this radioactive substance at a precise moment, protected by the casing on the syringe as well as his enormous gloves, but he moves over toward the examining table and injects the stuff immediately into Sophie’s vein. The tiny vein in the crease of her right elbow.
The radioactive substance is attached to a natural body compound, usually glucose but sometimes water or ammonia, and once this is administered to the patient, the radioactivity localizes in the appropriate areas of the body and is detected by the PET scanner. It takes from 30 to 45 minutes for the substance to travel through the body and accumulate in the tissue that is being studied, and after that time, the scanning begins. When Sophie is slid into the doughnut hole, she has been sedated. She is in there for a little less than an hour. Within the machine are many rings of detectors that record the emission of energy from the radioactive substance. The detectors permit an image of the brain to be obtained which is displayed on a monitor of a nearby computer. The images show alterations in biochemical processes.
I could hold up the copies of those images in my hand and peer in wonder at the inside workings of Sophie’s mysterious brain. There were spots there that were sort of blue, lit up, I suppose, from the radioactive substance. I wondered at the absurdity of it all, the juxtaposition of nuclear medicine and the incredibly primitive way in which the stuff was administered. Whatever was happening in the “basement” in that cyclotron had the power to travel through the veins and light up targeted tissue. But to get there, we still had to open the vein with a needle, a sharp point had to puncture vulnerable flesh. Couldn’t there be some kind of advancement in the administration of a nuclear material? It wasn’t the nuclear medicine that scared me that morning, strangely. I was undone by the seven needle sticks, the bumbling idiocy of it and my own helplessness.
The PET scan of Sophie’s brain was inconclusive. It showed “activity” on both sides of her brain and it was determined that she probably wasn’t a candidate for surgery. We were left hanging, again, in the unknown. People always say that it’s good to “rule things out.” So far, I have found that to be incredibly frustrating.
I got some new gray hairs just reading this.ReplyDelete
Elizabeth, thank you for publishing this. It takes courage to open to others.ReplyDelete
Great opening image, it will stick with me. I could hardly make myself read when you got to the part about the tech & needle. And the last few sentences completed the fearsome circle.
You probably have more description of Sophie earlier in your book. If this chapter were standing on it's own as a story, you might consider adding some here. And a vignette or remembrance or something to light her personality for the readers.
I like this as it stands. I can see the fat baby arms, the crease there. I can see your frustration building, I know that pain. And to understand that with you here, you were already a veteran, already armed and sure enough to say, "Enough. We need someone else to do this."ReplyDelete
You are the bravest woman I know. And such a writer, Elizabeth.
I think your writing is terrific, you have an amazing voice, you inspire boatloads of people, and you should publish this book already.ReplyDelete
Elizabeth, I broke into a sweat reading this - I've been both the patient and the mother in this whole bumbled needle stick scenario. Your description brought it alive; you're a fantastic writer.ReplyDelete
When my daughter was a baby she went through a similar procedure. It was one of the worst moments of my life. I think I broke a little that day. I understand this post and how inside you are scream and want to fall to the floor but you can't. Because she needs you.ReplyDelete
I love the beginning with the sculpture. Such a great metaphor! And the Mama Bear in you - so absolutely true-to-life.ReplyDelete
This is a very poignant snapshot, Elizabeth. Thank you for sharing it.
After all these years I still wince when I see a needle approaching. My veins roll and hide around my elbow and the descriptions of both the MRIs,ReplyDelete
CATscans, PETscans and the like just always leave me with a sense of frustration. Good news or bad news they have a mysterious power over both the physicians and the patients.
I know for the PET they come completely suited, with this syringe encased in a lead box and everything is so unreal and then everyone leaves the room and there you are, at the mercy of radiation.
I have asked to reduce the tests now. Knowing how things go, we will probably die of radiation as a result of some "undefined" cause.
I hope Sophie never needs another test of any kind and that some sunny morning she may get up by herself and ask you what is for breakfast. You know that in my heart that is my truest wish.
Loved the writing - felt like I was in the room with you.ReplyDelete
I was fascinated & a little horrified (7 sticks!?). How frustrating for you both. Though I thoroughly understand the twisted gratification of "ruling things out".ReplyDelete
Steph - There's always color!ReplyDelete
Kathleen - Thank you for your comments. This is just a chapter, and it's early in the life of Sophie --
Ms. Moon - You are too kind, but thank you.
erika - Know any agents?
Lisa - I'm sorry I brought back bad memories, but thank you!
Birdie - Yes, "broken" is the word -- little did I know how much would be broken over the years, how much one could break and still keep on!
kario - Thank you for commenting about the sculpture --
Allegra Smith - No one should have to endure these things. Sometimes I wish we lived in the days of shamans and medicine men and women. But I guess those times had their own particular agonies.
formerlyonlyamovie - Thank you. I wish you had been!
krlr - Still haven't "figured things out" -- except that we've figured out that there's no figuring out --
Leah - Thank you.
PET--- a word that normally conjures such sweetness. I think I remember this essay from a workshop and it still had me on the edge of my chair.ReplyDelete
We will do anything that we think will help/cure our children. Yay for you for putting your foot down that day. Remaining silent and stoic probably would have you still regretting it.
Getting caught up with your beautiful blog.
Yes, let's eat some cake.
After June 5th?
I love the sculpture. Kinetic work has always been my favorite.ReplyDelete
It is written very well.
I can't believe all you guys have been through, and I do think it is important to write your story.
Ok, I can't put it down. Yes - it's one of those E. You have a story that transports me and puts me right in your shoes and I want to keep reading to see how it all turns out. Only problem is, I know your life is only on about chapter 10.ReplyDelete
The chubby crease in her wrist makes me want to cry.
The sweating tech makes me want to yell.
And the radioactive protection makes me want to hide under the covers.
I have been through countless stick scenarios with Royce. The worst one was 8 - a doctor. The nurse got it first time after that. I can't bear it. Reading your incredibly clear and detailed recollections of that occasion made me remember how horrible and powerless I felt ... And how that sense of anger welled until I had to stop him. I was cross at myself for not stopping him sooner. I hate letting medical professionals take control of my son and prod and poke him endlessly. Yet without them he probably would be a lot worse off. It' s a bitter-sweet relationship I've learnt to tolerate.ReplyDelete
Modern medicine is still part snake oil, ruling things out, a little hit and miss, although doctors don't like to think of it like that. And what we can't fix, OMG, still the belief persists that doctors can fix everything and anything.ReplyDelete
The tech should have stopped after two pokes. Wanker.
great beginning, middle and end. As a former NICU nurse who sucked at getting in on the first time I shudder at a "TECH" attempting to start an IV on a baby...think this information should be sent home with each new mother as they leave the hospital...would love to read more!ReplyDelete
Reminds me of when Ben got bronchiolitis as a 3 month old. We were at a cottage and ended up at a rinky dink hospital. They couldn't get a vein in any of the regular places, and after exhausting all options, they put an IV right into a vein in my boy's head!
Good for you for putting your foot down. I was still too green and scared then.
It's so beautifully written Elizabeth. I want the rest!ReplyDelete
I'd love to read the whole book!ReplyDelete
Beautiful and heartbreaking, Elizabeth. And so immediate. The Lucite contraption is an apt metaphor for the maze you entered trying to get conclusive insight on how best to help Sophie. Your aching mother's heart is so palpable in this, and the dynamic of marriage, and the tech's indifference being the hardest of all things to bear. It is compelling in its details as well as in the emotion that in there in every word, without your trying for that. It's so real. I feel as if you took me inside the experience and for that I feel privileged and humbled and grateful.ReplyDelete
I am glad you are writing this book.
Love to you.
This had me in tears. For you, for Sophie, for all the mothers of sick children and for all those children, and for the countless times I've stood by my child being pocked by needles (once, the only vein they could find was in the head), and it was just the beginning.ReplyDelete
That art contraption must be a representation of frustration.