Part 6 (2/2)
”The only thing they want to believe is that I abused her!”
Kevin stayed with Anna while I went out for a while. She needed clean clothes, and I needed to regroup. When I came back, I was stunned to hear that the man from CPS had been there already and interviewed Kevin at length. Meanwhile, however, the radiologist took a closer look at the X-rays and determined that the fractures had not come from an outside force.
It was a relief to have the CPS issue dropped, though an apology might have been nice, but for me, the much larger issues were, first, the fact that this could happen at all and, second, the way that Anna stoically understated-or never stated at all-the actual extent of the pain she was in.
I started talking to her about it in different ways and tried to come up with some new coping methods like ”blowing the pain away.” With the constant needle sticks she was subjected to in the hospital, we'd made a game out of it.
”When the needle starts to go in,” I told her, ”we take a biiiiiiig breath in-and then we blow it away like whooooooshhhh!”
It made her feel like she had power over it, and she was always excited to share this trick with other kids in the ward.
Anna saw the Dallas specialists every other week or so. In July, there was another hospital stay, during which they agreed on the official diagnosis: pseudo-obstruction motility disorder and antral hypomotility disorder.
”We are fearfully and wonderfully made,” I always tell my girls, quoting Psalm 139. Our body does a thousand small things every moment of every day without our brain ever thinking about it, like an orchestra with all the individual instruments playing together in perfect tune. One of those things is peristalsis, which moves food through the system, but in a child with a motility disorder, that imperative neuromuscular symphony doesn't happen. The nerves misfire as the brain attempts to send messages to the intestine, which behaves as if it's obstructed, which in turn makes the risk of actual obstruction very high.
”I'm sorry to be the one confirming the diagnosis,” the specialist said. ”It's likely to get worse. It's a very difficult way of life for children with this disorder. Eventually they have to go on peripheral nutrition because the body can't tolerate processing food.”
Reglan was the best he could do for her, even though it left her rattling with tremors and a general jitteriness that made sitting through the school day a miserable gauntlet. On the days Anna did go to school, she couldn't wait to get home. On the days she didn't go to school, she couldn't wait for Abbie to breeze in the door with a game or a story or an adventure for whatever level of activity Anna could handle, and Adelynn was right there behind them.
Our home was a happy one, despite the b.u.mpy road. We laughed, we teased, we went places. It was hard to commit to extracurricular activities, but we did our best to keep the girls involved and active. Abbie played softball and excelled in school. I enrolled all three girls in gymnastics.
Every six weeks or so, Anna landed in the hospital for a few days. It became a way of life. Kevin and I had the routine down to a science. Abigail and Adelynn could run the obstacle course, from grabbing backpacks to buckling seat belts to hopping out at their host home. Our friends and family got used to seeing our number pop up on their caller ID at any and all hours. They were there for us at a moment's notice, morning, noon, and night.
We were surrounded by so much love during those years, from the mountain of stuffed animals and strings of colorful cards in Anna's hospital room to the freezer full of ca.s.seroles and cookies at home. (I don't care if you're a master chef-you don't know a thing about ca.s.seroles compared to Baptist church ladies.) Pastor Scott cared for us like a gentle shepherd. Gran Jan and P Paw and the rest of the family never let us feel left out or let down. I hope the one thing Anna and her sisters remember about those years is that enormous wealth of love.
We maintained the plate-spinning act until the end of 2008. I was hauling out Christmas decorations when Anna suffered a terrifying dystonic reaction to the Reglan. As a misfired neurological response gripped muscles in her neck and back, her posture contorted horrifically. Her head cranked back impossibly. She couldn't speak or swallow. We seriously thought she was having a stroke. To this day, the girls refer to this harrowing night as ”the stroky thing.” In the car on the way to drop Abigail and Adelynn with the emergency child-care tag team, Abbie kept saying, ”Mommy, something's really wrong. Anna, say my name! Say Abbie!” But Anna couldn't.
I ran into the ER, carrying her in my arms, and they rushed her into treatment immediately. The doctor told her to stick out her tongue, and it lolled sideways, swollen and pale. She was treated with a megadose of antihistamine and released the next day. We stopped to pick up the girls on the way home, and the moment she got in the car, Abbie said, ”Annabel, say my name.”
”Abbie,” Anna said, and the next moment she was curled up asleep with her head on Abbie's shoulder.
Looking back on the experience, she sums it up with cla.s.sic Anna nonchalance: ”It was very disappointing. I had saved a cracker from my Lunchables, and I was really looking forward to that.” When I got home and Googled ”dystonic reaction,” the first website that popped up trumped her cool reaction with the understatement of the day: ”Caregivers may find this alarming.”
Ya think?
The plate-spinning act had come cras.h.i.+ng down. We picked up the pieces and started building a new regimen of meds-without our big gun, Reglan-wondering how long Anna would be able to endure an endless cycle of events like this-or worse than this, because now the pediatric gastroenterologist was talking about a colostomy bag and other seriously invasive measures as the next step.
”If she were my child,” the motility specialist told me, ”I would take her to Boston. Dr. Nurko is the number one guy. And he's one of the few people who could write her a prescription for cisapride.”
When we got home, I got right to Googling and discovered that Dr. Samuel Nurko, director of the Center for Motility and Functional Gastrointestinal Disorders at Boston Children's Hospital, was also an a.s.sociate professor of pediatrics at Harvard Medical School.
”She's right,” I told Kevin. ”It says here he's one of the world's leading physicians in the diagnosis and treatment of pseudo-obstruction motility disorder. One of his patients says on this video, He always does what's right, not only as a physician but as a human being.' I like that.”
Cisapride, I'd learned, was voluntarily removed from the market because of potentially serious side effects, but Kevin knew enough about it to know that it could be Anna's best hope. Which meant Dr. Nurko was her best hope.
It took several months and a lot of persistent prayer to get her an appointment with him, but in January 2009, Anna and I made our first trip to Dr. Nurko's office at Boston Children's Hospital. We were both nervous, waiting in the white-and-lavender exam room with all our hopes and prayers on the line. Dr. Nurko walked in with his huge smile and jolly bedside manner, credentials dangling from a bright-colored Elmo lanyard. He was positive and approachable and didn't talk down to me or to Anna. She had developed a mistrust of doctors and nurses who were condescending and dismissive, which is understandable, but she responded immediately to Dr. Nurko's easygoing style.
”Do you have any questions about that, little one?” he asked her, and of course she had many. Dr. Nurko answered them all without a whiff of the arrogance and impatience we'd gotten used to.
I felt like we'd made it to the base camp where Anna could regroup and find a new way forward. As Dr. Nurko examined her, he cracked jokes and asked her about her life, but his focus and precision never wavered.
”You have this condition,” he told her without drama, ”in which the muscles in the GI tract do not work. And when that happens, when you take food by mouth, the food doesn't go anywhere and you cannot absorb it. And as all of us know, when you cannot eat and get nutrition, then you cannot survive.”
When he delivered this clear, concise description of pseudo-obstruction motility disorder, it was like a lightbulb lit up over her head. Even for me, after all I'd read and researched, after all the bloviating explanations and excuses I'd sat through, I found that nutsh.e.l.l explanation enormously comforting. He tamed it where others tried to beat it down. Others shook their heads; Nurko nodded.
”You're like Elmo,” one of Dr. Nurko's little patients told him a while back. ”You just need to paint your head red.”
Anna would agree with that characterization, I think. Dr. Nurko had a wide smile and wore funny ties. His clipped Mexican accent and booming laugh stood out from all the usual bustle and chatter in the hallway, so we always knew when he was coming. His expertise brought patients to Boston from all over the world, but I had just as much appreciation for his kindness.
While Anna played, he talked with me about the risks and benefits of cisapride. On the downside, the potential side effects were very scary: cardiac arrhythmias, ventricular tachycardia, congestive heart failure. Dr. Nurko would have to closely monitor Anna personally, which meant bringing her to his office in Boston every eight weeks for blood work, EKG, office exam, and anything else he felt was necessary. We were told these were the drug company's stringent ”compa.s.sionate use only” rules. No exceptions.
On the upside, cisapride was our best hope for restoring a balance that would allow her to eat and digest actual food and live a seminormal life.
”The specialist in Dallas was talking about a colostomy bag,” I told him. ”He wanted to implant a gastronomy b.u.t.ton in her stomach for tube-feeding and meds.”
”We should be able to avoid that,” he said. ”It's important for the best possible quality of life.”
”Oh, I agree! I'm so glad to hear you say that. I kept trying to tell them. It's not enough to survive. She needs a chance at happiness.”
”Yes, yes. Quality of life.”
After a lot of soul-searching and homework, Kevin and I decided to let Dr. Nurko put Anna on cisapride, even though the long-term financial and logistical commitment was about as daunting as leaping the Grand Canyon on a bicycle. The financial burden began to mount, but we never questioned that we were doing the right thing. Dr. Nurko-and cisapride-became our lifeline, making it possible for Anna to eat lunch at school, have a few bites of birthday cake, and enjoy a tiny taste of ”normal.”
I love seeing the b.u.mper stickers that celebrate things like ”My child goes to Texas A&M!” or ”My kid is a Fighting Sunfis.h.!.+” or ”My Grandchild is on the Honor Roll!” You'll notice there is no b.u.mper sticker that says, ”My kid is living a relatively normal life a lot of the time!” But there ought to be. I know we're not the only ones who've learned to cherish a decent night's sleep, a walk in the woods, getting down on pup level for a game of tug-of-war with a happy dog. Dr. Nurko gave those things back to Anna's life. He gave Anna back to us.
In the next three years, Anna and I made twenty trips to Boston. Usually we just stayed overnight and came back, but sometimes Anna's condition was unstable enough that she had to be admitted to the hospital. We didn't want to be there, but Dr. Nurko made it sound manageable. ”Now we get you better, Anna. Okay?”
After the first year, we got the fabulous news that Dr. Anees Siddiqui, who'd been mentored by Dr. Nurko, had moved to Austin and would be able to handle some of Anna's follow-up from there. The first time we saw him, he ran a test that required him to constantly check in on Anna to see how her body reacted to small amounts of food and liquid carefully given to her over the course of about twelve hours.
”Do you see anything? Can you tell anything from that?” I plagued him with questions every time he walked through the door.
”We're getting some good information,” he kept a.s.suring me.
He couldn't talk results with me while the data were still coming in, and I understood that, but on the flip side, Dr. Siddiqui understood why I had to keep asking, and he never once acted like that was a pain in his neck. He never rushed his encounters with Anna or brushed her questions aside. It was immediately apparent that the knowledge he'd gained from Dr. Nurko extended from the tummy to the person with the tummy, and beyond that to the people who love the person with the tummy.
We still had to trek to Boston periodically to maintain Anna's cisapride treatment, but in between, Dr. Siddiqui helped keep the rest of her meds in balance. They were a great team. Dr. Nurko was big and boisterously funny; Dr. Siddiqui was trim and gently good-humored. Both of them were amazingly knowledgeable and enormously kind. I guess if you think of Dr. Nurko as the Lincoln Navigator of gastroenterologists, Dr. Siddiqui would be the BMW Roadster.
Boston gave us another great gift too. On our very first trip, I was afraid to go there alone with Annabel, so my sister Angie gladly took off from work and went with us. My sweet sister is all about absorbing new opportunities and experiences; if she sees a way to help, learn, grow, or just be part of the scene, she's right there. We were in the crowded hotel restaurant the night before our appointment with Dr. Nurko, all of us a little nervous, and Annabel accidently knocked over her large drink. Our busy waiter, clearly dismayed, whisked by with a few c.o.c.ktail napkins from the bar and left us with the mess.
As my sister and I scrambled to scoop ice back into the gla.s.s and sop up the puddles, I heard a thick Boston accent over my shoulder.
”Oh my G.o.d, he does not have children! Clueless on how to clean up a mess.”
And just like that, Angela Cimino-half blond bombsh.e.l.l, half Good Samaritan-stepped into our lives with a stack of paper towels and one of the biggest hearts I've ever known. Her cheeks looked warm and wind-burned, and I could tell by her eyes that she loved to laugh. By the time the table was cleared and Anna was set up with another Sprite, we were exchanging life stories. A single mom of three, she knew a thing or two about spilled milk, and like me, she's not the type who cries about it.
Over the years, we talked a lot about faith and prayer. Angela had been raised Catholic, but church was a place she hadn't been in a long while and wasn't prepared to go anytime soon. Prayer was... well, she'd seen a lot of prayer with mixed results. She didn't spend any time on it these days. Angela was about practical concerns-getting through the day-and at that moment, so was I. It was all the common ground we needed to become fast friends.
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