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The Perfect Fraud Page 2
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As I probably could have guessed, Stephanie’s current specialist, Dr. Rondolski, has been an absolute asshole about me taking this step. But if he can’t cure her, what the hell does he expect me to do? Sit by her bed, hold her little hand, and watch her slowly die?
I’m luckier than other moms with sick kids. I had three years of nursing school, and I’m still amazed at how much I remember. During my third year I got pregnant with Stephanie, but before that, I was studying hard and getting ready to start my clinical training in the community hospital. Shock all around and a quick wedding. Of course, I quit school the month before she was born.
But I know a lot of the medical terms and can understand the tests and what the results mean. To most people, it’s like a foreign language. That’s why, when Steph’s in the hospital, I’ll go room to room to talk to the other parents. Sometimes they’re confused about what’s happening to their kid, and I can translate the scary medical words into plain old English. I swear ancient doctors did this on purpose. I mean, what better way to get patients to do whatever they’re told? Just make the language totally impossible to understand.
I was really hopeful about Dr. Rondolski. He was highly recommended by my daughter’s fourth pediatrician, who said after treating her for almost two years, “I’m not sure what else I can do.” At first, Dr. Rondolski was so wonderful. He was really on top of things. Of course, he ran every kind of test, including some new ones, but mostly repeats. At least fifty blood tests, lots of CT scans and MRIs, a breath hydrogen evaluation to check for lactose intolerance, and also an endoscopy and colonoscopy to try to find out why Stephanie almost always has the shits. And he would actually listen to me when I told him about her symptoms. In the beginning, he even said that my nursing background was a huge bonus since I could understand what he was saying to me. I thought, great, we were partners, and together, we would figure this out.
But that isn’t what happened. It started to take a really long time for him to return my phone calls, or sometimes he never called back at all, and I had to call again. Of course, I knew he was busy. It took months to get in for that first appointment. But I began to wonder whether his dipshit front office person was screening my calls and telling him whether or not I actually needed to speak to him. It was so frustrating.
The final straw was in the emergency room, six weeks ago. Stephanie had been doing so good for a few days. No vomiting, no diarrhea. And she was actually eating. Not a lot but a couple of bites here and there. I thought maybe, finally, she was getting better. Then, that night, we’re sitting on the couch watching Frosty the Snowman. I taped it for her last Christmas. Out of nowhere, Steph begins to ask me all sorts of crazy questions. Like what was the snowman’s name and why was that little girl going with him on the train to the North Pole? Stephanie had Frosty practically memorized by the time she was three and could sing the whole song, without screwing up any of the words. But that night, she was all confused and couldn’t get it right.
She asked me for a drink of water and then for another one. She gulped these down so fast I wasn’t surprised when she grabbed her stomach and threw up all over the couch. I ran to get a towel, and when I came back, she was on the floor. Her back was arched, and her arms and legs were twitching. I recognized a seizure when I saw one, so I threw her in the car and drove like a maniac to the emergency room.
They called Dr. Rondolski, and he met us there. He asked me if Stephanie fell that day, thinking maybe she had a head injury. He asked me if she had been running a fever. He was looking for anything to explain why she was having seizures.
After eight horrible hours in the ER, he finally told me what was going on. He said that Stephanie had hypernatremia, which was too much sodium in her system. He said normal serum sodium levels are 135, or maybe 145. Hers was almost 170. They gave her fluids to get down the level of sodium, and eventually, the seizures stopped. Dr. Rondolski wanted to keep her in the hospital for a while to see if he could find out why her sodium level was so high.
But it’s been six weeks and he still doesn’t know what the hell’s going on. He ran all the same tests all over again, and it feels like we’re no closer to an answer. We still don’t know what’s wrong with her stomach or why her sodium level went nuts. I feel like I’m just standing by and watching her go downhill every day. I’m scared out of my mind. I decided that, even if it meant moving to another state, I had to find someone who could finally figure out what’s going on with my daughter. Now I just have to get her discharged so we can leave.
Getting ready for the trip is driving me nuts. I’m only taking two suitcases. I roll pajamas to squeeze in next to our sandals. I’m thinking we’ll probably need sneakers too. When I kneel down to lift up the dust ruffle, I feel the pain in my knee. I had a bad fall off a bike when I was a kid. What was I thinking anyway, trying a wheelie like the cool girls? The nineteen pounds I put on the past five years don’t help either. Even though I’m only thirty-two, I know I need to get knee replacement surgery. But it will have to wait. Stephanie is first. Stephanie is always first.
No sneakers under the bed. I hold on to the side of the mattress and pull myself up. The sheets smell like cheese, and there’s a cup with day- (or week-?) old coffee on the night table. Piles and piles of pages of printed Internet articles about kids’ stomach issues are all over the floor, the chair, and the top of my makeup table. Every drawer in my bureau is open, and stuff is falling out onto the rug, which still has a piss stain on it from Maxie. That poor cat is always ignored when I have to stay at the hospital all one day and into the next. It looks like the house was attacked by robbers who didn’t have a fucking clue what they wanted to steal.
I shut my eyes and try to take a deep breath, but it feels like the air only makes it as far as my collarbone. When I open one eye, I see the toe of Stephanie’s pink Ked sticking out from under my jeans on the floor in the corner. This is at least half a success, but I’m too tired to keep looking for the other sneaker. I head into the kitchen. It’s only slightly less gross in here. I fix coffee that’s old and probably tastes like shit, but so what? It’s caffeine. I shove the mug in the microwave and sniff the half-and-half. There’s an open package of powdered-sugar miniature donuts in the cabinet. Stale, but I don’t care. I eat two, and white powder falls all over the front of my T-shirt.
Out the back window, I can see Mrs. Manfield’s head above the fence between our yards. She looks over and waves, and I wave back. It’s a nice neighborhood with medium-sized houses that were built in the early eighties. Some people have lived on this same street for over twenty years. We’re the newbies, only three years, but everyone’s been really great. They know what’s going on with Stephanie and bring over lasagna and meat loaf to help me out.
I open the kitchen door a crack, letting in the soggy air, and yell, “Hey, thanks for the snickerdoodles. They were yummy. And your tomatoes are looking amazing.”
“Oh, you’re so welcome, honey. I’ll give you some when they’re ripe. How’s that baby doll of yours?”
“Hanging in. Might get her discharged real soon.”
“Bless you both.” She blows me a kiss.
Heaving myself onto the stool at the counter, I open up my laptop to check comments on my post from last night. I started Stephanie’s Battle Blog about a month after she was born. I thought if I talked about what was going on with me, maybe I could help other moms with real sick kids.
Marti in California wrote: Hi Rena, Your most certainley right-sometimes the docs and hospitals make everything so much more dificult. I had to go to the ER again last week because of Brians asthma. I thought my boy was dying. It was awful and they kept him for two days and pumped him filled with drugs. I need someone to figure out why Bri can’t breathe. Keep up the fight!!! please for all of us.
From Lizkitty: Have you tried apple cider vinegar? It’s great for tummy aches—full of good enzymes. Just 1–2 tablespoons a day does it. But you MUST get RAW, UNFILTERED, ORGANIC. Hope this
helps [smiley cat face blowing kisses]
And one from Barbara T: As always, you and your little girl are in my thoughts and prayers. I know Jesus will guide you to the right care.
Only three responses so far, but it’s still early.
I take a sip of the coffee and gag. Two black-capped chickadees are pushing each other around on the bird feeder. There’s not much seed to fight over, since I don’t have any time to keep filling it. I try to sit quietly and pay close attention to every movement and each sound, letting the experience fill my brain and body. That’s what Ricki, my Madness to Mindfulness instructor at the community college, said to do. I try to focus on their teeny hops and their peeping sounds. I think I’m doing this mindfulness shit right but then, the birds get pushed away as pictures of medication drip bags, IV tubes, infusion pumps, and my little girl’s pale, sweet face take over my brain.
Maybe it’s relaxing for some, but I’m pretty sure mindfulness is for people who have plenty of time to waste.
I look at my watch. Shit. My appointment with Dr. Rondolski isn’t until one, but since I took so much time forcing myself to watch the stupid birds, now I won’t be able to wash my hair or even shower. I run back to the bedroom, grab wrinkled khakis from the dirty laundry and one of Gary’s old shirts. I put that on over the Giants sleep T-shirt I’m wearing, which has not only the powdered sugar but also last night’s BBQ sauce on it. I wipe at the sugar and manage to smear the white across the front. My hair is a disaster. I pat down the blond frizz in front and fluff up the squashed pieces on the sides. I move my part back and forth a couple of times to try and cover the black roots. It’s like cleaning the bathtub after the rest of your house blows away in a hurricane—nice try, but forget about it. I spit on some tissue and rub at the black smudges of mascara under my eyes. Nothing I can do about the dark circles and huge bags there, unless somehow I can go to sleep for about four days straight. Yeah right. I smear pink gloss across my chapped lips.
Slamming the door behind me, I jump into the Toyota and screech backward onto our street. Late again, but Dr. Rondolski will just have to wait. I need to check up on Steph first. Maybe I can get her to take some broth, just a spoonful or two.
It starts to rain as I park the car, and the dark hospital lobby feels even gloomier than usual. St. Theresa’s has been updated many times since the 1850s, when it was built, but it still feels like somewhere in here there’s a doctor with dirty fingernails taking out an appendix with a hacksaw. As always, I try to make small talk with the guard. And as always, he mumbles something I can’t understand and points to the visitor’s log. I write my name and clip a plastic badge to my shirt.
This place was definitely not my first choice, but it is close by, two parkway exits north of us, so I can get here in less than thirty minutes when traffic’s not a mess, which it usually is.
Stephanie’s room is dark, and the shade is pulled down. The television is turned on, but the sound is low—just like I instructed the nurses. In my heart, I know Steph feels better in this kind of environment, like she’s in a cocoon, all warm and snuggly. A mother’s hug, when I can’t be with her. I can hear my baby. She’s snoring softly.
There’s a tap on the doorjamb, and I wave at Marsha, one of my favorite nurses. I smooth the hair back from Steph’s damp forehead and walk into the hall.
“How was her night?” I ask.
“Hard, very hard, Miss Rena.” Marsha is from Jamaica, and with that accent, even bad news sounds a little better. “She up all night, restless like. Say her stomach hurt something awful.”
I look back into the room, where Stephanie is curled up tight. She looks like a tiny sleeping shrimp. The blankets are tucked around her, which I’m sure Marsha did. She’s the only nurse who always follows the instructions I typed and had laminated, and then taped to the wall above the bed.
“Poor baby,” I whisper, giving Marsha’s fat upper arm a squeeze. “Thanks for everything you do. I don’t know how Steph and me could stand it here without you.”
“Of course. Now, Miss Rena, don’t you worry. I’m sure she’ll be better real soon. That doctor you going to, she good, right?”
“Here’s hoping. Before we go, I’ll make you that fudge you like. I’ll leave it at the desk, but you be sure to share, okay?”
“Maybe I will and maybe I won’t,” she says. She laughs and follows me back into the room.
I sit on the edge of the bed, listening to my daughter’s hoarse breathing. Stretching out next to her, I carefully push my hands through the IV tubing and hug her damp body close to me.
“Okay, good mama, you girls have a little nap, now,” Marsha says.
Someone shakes my shoulder.
Standing above me is the shift charge nurse, Betsy. My shirt bunched up while I was asleep, and she’s staring at the tattoo (a heart with the letter S inside it) on my lower back. Her arms are folded over her uniform, and she looks like she just sucked a lemon.
“He’s waiting for you, Mrs. Cole.”
“Huh?”
“Your appointment . . . with Dr. Rondolski. He’s waiting for you in his office. Number three-oh-four. That’s on the third floor,” she adds. Hospitals should really screen their staff for bitchiness.
It takes me a minute to untangle myself from Steph. I sit up and rub my eyes. “Wow, how long did I sleep?”
“I really couldn’t say. I just told him I would tell you he’s waiting.” She looks at her watch.
“Fine. I’m going. And Stephanie needs a fresh pillowcase. It’s on the schedule,” I say, pointing to the wall. Nurse Bitch thinks I don’t notice, but as she turns around, I see her roll her eyes. The sooner I get my child out of this shithole, the better. Kissing Stephanie on top of her head, I whisper that I’ll be back.
I take the elevator to the third floor and knock on the office door.
There’s a muffled, “Come in.”
Dr. Rondolski is sitting on a big leather chair behind a huge desk. He doesn’t even look at me when I enter.
“Please, take a seat.” He waves at the chair across from the desk.
I’ve never been in his office before. All our other conversations have been in the ER or in Stephanie’s hospital room. Not exactly conversations, mostly him talking at me, blabbing about his latest theory. Crohn’s, inflammatory bowel disorder, GERD. My baby’s on the floor screaming her tummy hurts, and he thinks it’s acid reflux? Are you shitting me? Lately, every time we talk, it’s ended in a fight, with him trying to convince me to keep Steph here.
I sit down.
On the wall behind him is his doctor’s certificate. It’s from Yale, and it’s in a dark wood frame that takes up most of the wall. Fine, we get it. You’re a hotshot doctor. Probably have a teeny red convertible—and a dick to match.
Dr. Rondolski starts tapping the fingers of his right hand on the top of the desk. With his other hand, he pulls a file folder from his drawer. I see Stephanie’s name on the tab. He takes his time flipping through the papers, still tapping—tap, tap (pause), tap, tap, tap.
I start to say, “Hey, I need to get back down to my daughter, so if we—” when he cuts me off, not moving his eyes up from the file.
“Thank you for coming to see me.” He finally looks at me. “I know it’s been a difficult time for Stephanie, and for you. Her case has been, to say the least, challenging.” He stops talking. I’m not sure if he expects me to say something like yes, it is challenging, and, of course, I know you’ve done everything you could.
“Yeah, the whole situation stinks” is all he gets from me. Then I add, “Which is why I’m taking her somewhere else.”
He stares at me for so long, I think maybe my lip gloss must be smudged, so I wipe at the sides of my mouth with my fingers.
“As you know, I’m concerned moving her now could compromise her already delicate health,” he says. He scratches behind his ear and then rubs the back of his neck. His face is so pasty, it looks like he hasn’t seen the sun in about ten years.
Then, he coughs into his palm. Gross and very unsanitary for a doctor who should know better. I tell myself to remember not to shake his hand if he offers it when this is over.
He sighs and says, “I wanted to try one more time to dissuade you from taking this step. Your daughter is a very sick little girl, and until we can fully get a sense of what’s going on, we feel any change right now could have serious negative ramifications for her health.”
That does it. The mama bear starts to rise up in me. All the fear and frustration from the past six weeks—Jesus, from the past four years. I don’t want to, but I just lose it.
“Serious negative ramifications?” I sputter. “Until you can get a sense of what’s going on?” My teeth are grinding together so much, my jaw hurts. “Are you kidding me with this? Exactly how long did you think I was going to leave my baby here while you torture her with all your tests and even after almost two months, you still don’t have a single clue what’s wrong? You think I won’t do anything I can to get her the best care with the best doctor? Well, then . . . you’ve got the wrong mother.” I stand and push the chair back so hard it crashes over.
“Mrs. Cole, please sit down so we can talk about this rationally,” he says.
“No way. Not a chance,” I shout. I’m shaking as I march to the door. He stands and holds up his hand. What is he, the crossing guard at the elementary school?
“This is a bad idea. She’s too weak right now. Please, in my opinion, moving Stephanie at this time is a very bad idea.”
“Hey, guess where you can shove your opinions and all the rest of your worthless medical advice.” I yank open the door and it bangs against the wall.
“Won’t you at least tell me where you’re taking her?”
I don’t turn around. I don’t want him to see the tears running down my cheeks.
“To Wisconsin,” I say. “There’s a fantastic doctor there who specializes in kids’ stomach problems.”
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