Tag Archives: degenerative disorders

Nurses with Popsicles

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Transitioning into the Francis Building wasn’t easy, but it was the smoothest bumpy road we’ve ridden. The Mayo Clinic’s St. Mary’s Hospital has everything a girl could want. Disney movies on demand, Mac ‘n Cheese and nurses to accommodate. Without the incredibly attentive support staff, I don’t believe the EEG would’ve been successful, but would have instead fallen into the discarded pile of our failed EEG attempts.

I held my breath when the EEG techs unwrapped her head to attach and verify the leads. I was certain they wouldn’t get her head wrapped again. Savannah wasn’t pleased, but astoundingly, she let them probe her head and re-glue what needed to be done. Although, I think it helped that one of the techs knew Larry, the giant stuffed cucumber laying in Savannah’s bed. It’s always good to have a friend in common.

Then we got down to business and changed from the horrible hospital gown into a very stylish, very comfortable, very hot pink swimsuit. What else would a fashionista wear for a hospital stay?

With A Bug’s Life on the hospital tv, Mickey Mouse Christmas on our portable DVD player, Larry and friends in bed and comfortably dressed, there was only on thing missing. Mac ‘n Cheese.

I felt a bit foolish when ordering the food. (Yes, St. Mary’s has room service. You are given a menu when shown your room.) My first order was for Mac ‘n Cheese and two orders of French fries. I’m sure I looked like the conscientious mother. What the voice-waitress didn’t know what that the fries were also for her bored brother, who had been a trooper on the sidelines for the day.

Shortly after the food arrived, so did the giggles. I can’t say I’m happy about the food I let her eat during our stay (2 helpings of Mac ‘n Cheese, two sugar cookies, fries, a chicken sandwich, angel food cake and a muffin). I’m not sure if it was to keep her compliant or out of guilt from the circumstances, but twenty-four hours of gluttony is minor compared to a lifetime of having those EEG results.

St. Mary’s staff was amazing. Within the first few hours, two EEG doctors visited to be certain I knew what to expect and that the goal was to get the EEG. They would do whatever they needed to keep Savannah happy and compliant and all nurses had been made aware of this. An extra nurse was assigned to Savannah as a “sitter.” The sitter could be either in our room or right outside the door, it was my preference, in case an episode hit.

Which it did.

Savannah decided it was time to leave. Of course, we couldn’t. Hence, the episode. It started as anger, then a melt down, then I pressed the panic button. I was wrapped in the EEG cables with Savannah trying to push me to the door, but actually pushing me into the bed and floor, screaming and crying all the while. The nurse, again I wish I could remember his name – Mike, maybe – came rushing in. He calmed her while I unraveled me, then he placed her on the bed, which had been padded in anticipation. We both talked to her, but she screamed and cried and continued to beat her head against the padding. Once she realized the padding was secure, she began to punch at Mike, but he took it and continued to talk to her, no more fazed than if a feather had drifted into him. Then she found the part of the bed that had not been padded. She leapt for it head first, but Mike’s hand was already there, waiting to catch her forehead. I handed him a pillow, and he caught her head with it each time she lunged. Over and over with her barbaric yell, he never flinched. After roughly ten minutes, she left her head on the pillow. Her eyes filled with water that trickled down her nose and cheeks. He continued to cradle her head until the sniffles had passed, and she had regained herself.

Everything after that moment was surprisingly easy. Child Life came in with crafts tailored to her preference and ability. Favorite Disney and Pixar cartoons ran back to back. There were sticker crafts and coloring pages and puzzles and selfies with Larry, until she finally drifted to sleep.

The sitter came in and watched over Savannah so I could sleep. I figured I wouldn’t be able to sleep, especially with a stranger sitting in the room. But maybe that’s why it was so easy. I honestly couldn’t stay awake. It may have been the strenuous drive there. It may have been the stress of the day. It may have been the knowledge that I was off duty. If Savannah woke screaming or laughing at three in the morning, there was someone to take care of it. I may have easily slept just because I could.

Of course Savannah decided to sleep an unusually typical eight hours. She woke sweetly and giggly. There were a few tears when she realized the leads were still on, but they were quickly alleviated with cuddles. We ordered muffins for breakfast (yes St. Mary’s room service even has gluten-free muffins!) and played educational matching games. The moment Savannah became anxious to leave, the nurse answered her request for a red Popsicle, and the morning continued smoothly. Nurses with Popsicles are awesome.

Savannah had just started her red Popsicle when the doctors arrived. Both EEG doctors came in for the results. They were thorough and addressed every concern, yet it didn’t take them long to deliver the news: The EEG was normal. There were no seizures haunting her dreams, and the episode had nothing to do with brain activity. Her EKG was also normal. The irregularity was confirmed as a reaction to the sedation.

Savannah looked good.

I could feel the huge sigh of relieve escape, but despair quickly filled the space. It was another non-answer.

Our Thursday appointment with Dr. R had been moved up to that afternoon. We were released by 10:00am with instructions to return at 1:00pm to meet with the great medical detective and discover which path was next.

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Smoking Caterpillars, Vanishing Cats and Humming Girls

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My daughter is so brave.
We entered the Mayo Clinic’s St. Mary’s hospital early Monday morning. We rode the shuttle from the hotel with a suitcase, a purse of toys, an iPad and a giant stuffed cucumber. We were admitted and taken back, past the oil-painted nuns,up the east elevators and to the prepping room in Joseph. She was anxious and edgy, but we made it through the waiting. She did try to escape a few times, but we made it.

She has had two other MRI’s, both with sedation, but I doubt she remembers them or if she does, I doubt she correlated those experiences with this one. I wonder what she thought as we forced her to change clothes and refused her her red shoes with polka dots. I made promises to stay with her until she was asleep and to be there when she wakes, but how comforting does she find that? I told her they were going to help her take a nap with medicine that would give her wonderful dreams like Alice in Wonderland with smoking caterpillars and vanishing cats, but she only anxiously hummed as she was wheeled down the chilled labyrinth corridors. Not having eaten, she begged me for dum dums and red apples, and I promised her all of those as soon as she woke from her nap, never knowing if there were red apples at hospital.

St. Mary’s was incredibly accommodating, allowing me back during sedation. They cooed over her iPad case and polka dotted shoes (which they decided to let her wear). She resisted the mask but once on, quickly breathed her way into a deep sleep.

We were told to expect to wait three to four hours, but after getting a pager and eating lunch and moving rooms, after two pages to the desk for phone calls from nurses and finding the monitor to watch her progress and borrowing a joke from the jar with her brother, it took no time at all.

She was restless but mostly drowsy. The sedation hung heavy around her, clinging to her flesh. Moments after I told her I was there, she surcommbed to the drugs and drifted back into the fog. Her head was bandaged, an attempt to protect the EEG leads. I knew they would be there but wasn’t prepared for how terribly tragic it would actually look. Her entire head was bandaged, her lips pale and trembling, her skin frigid to touch. On occasion, one eye would part and aimlessly roam the room before shutting again, only to let the other eye repeat the action a few minutes later.

She continued to kick the heated blankets off, but her body trembled mercilessly. “Her temperature was down to 35 (95 Fahrenheit) when they brought her out, so we’re trying to keep the blankets on her,” a nurse informed me.

Not only had her temperature dropped unexpectedly low, but so had her heart rate. With all of her sedations, there has never been a complication. I remained perfectly calm, as I held her hand and spoke with the nurses, but my heart thudded against my sternum. A cardiologist was called in. He had already come by a few times to check on her, and continued to monitor her by phone. One thing I have learned about the Mayo, there is never time for a patient to want. Phone calls and texts are made as soon as a need arrives, expected or not. Even though her heart rate was increasing (it was up to 50 by the time I arrived), the beat was irregular. By the time the decision was made for an EKG, Savannah was awake and irritated. She tugged at her finger monitor, grasped at her I.V. and clawed at her bandaged head, fighting to sit up with an animalistic whine.

It was a nursing student from Indiana, interning at Mayo, who had the brilliant idea to fetch an iPad. I wish I was better with names. I wish I could thank her properly. I wish I could give her the credit she’s due. I can, however, be thankful that Savannah’s MRI occurred during her ten weeks with Mayo.

Drowsily, Savannah pushed the nursing student out of the way and began to rummage through the apps. She fussed and hummed and distractedly swatted at the EKG tech, like a bothersome bug, but she sat through the EKG focused on an app, except for the occasional disgruntled look.

With her finger monitor removed, a team of nurses and the iPad still on her lap, we headed up the elevators, back through the labyrinth, down to Francis and our new room for the next twenty-four to forty-eight hours. She had done it. Savannah had made it through the MRI, not fully understanding, at least I don’t believe she fully understood, it was just the beginning.


Too Much To Wait For

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Tomorrow’s the day.
We are tucked in our beds. Savannah’s suitcase has been re-packed with EEG-friendly clothes. We have reached the food prohibition time. Now, I am waiting for her to fall asleep so I can hide the snacks and water and everyday clothes. Then I can pull out the toys I’ve snuck along, just for a hospital surprise, in the hopes she’ll play with them.
The rational part of me wishes she would go to sleep. Midnight has passed, my body is tired, and the shuttle leaves bright and early. The realist part of me knows that even if Savannah was asleep and the food was hidden and the toys were packed, I would still be lying here awake. I would be waiting for tomorrow. Waiting for the shuttle, the anesthesiologist, the insurance approval.
There’s too much to wait for to sleep.


the Bike That Wasn’t Pink

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When Savannah was three she would cling to the padded pink handles of her princess bike, hands gripping from underneath instead of above. She’d petal her legs and squeal “wee!” with each press of the pedal that lurched her forward. Slowly and cautiously she sputtered around our apartment and then and eventually our house.

“Wee! Wee! Wee!”

At five, after we moved her away from her friends and family to a new state to find her voice, she looked out the window at the new neighborhood kids riding their bikes. She took my hand and lead me down the stairs then down the basement stairs and to her bike. She climbed on her larger pink bike still with its training wheels, gripped the pink padded handles from underneath and sat there. She sat there and then she sat there and then she cried. She knew she should know what to do, but she didn’t and so she cried some more.

Savannah was eventually put into physical therapy to help with gross motor skills and motor planning. One out of eleven goals was to learn to ride a bike. The bike was large with three wheels. It had an ugly curved black back support, a belt and clunky non-pretty pedals.

No part of the bike was pink.

One year later Savannah was riding the ugly bike with minimal help from her therapist. (Steering was still a challenge!) Savannah was so proud of herself. It was fun. It was typical. It was something she could with friends. Savannah loved physical therapy. There she could ride a bike. Unfortunately that is the only thing she could do. Despite her best efforts, she had not met any of her other goals. The insurance company decreed the physical therapy was not helping and services where discontinued.

Savannah lost her bike. For the past five years, we have tried to obtain an adaptive bicycle. We have applied for grants, for government programs, for private programs and jumped on every waiting list we could find. We are still waiting. Each day we wait is a day Savannah cannot relate with the neighborhood kids. Each day she gets older, the more awkward it becomes.

There is a new contest. Please vote and help Savannah get her bike.

https://www.friendshipcircle.org/bikes/triaid/


Back to Better

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We finally caved when Savannah’s boot breezed past my face, the heat of it tingling my lips. We drove the rest of the way home with her screaming and banging on the glass, trying to escape. She repeatedly smashed her head into the window and her fists and her knees. Fears of cops filled the gaps of the anxiety laden air. We had to make it home, but we were hours away, and had found traffic.

The next day we sat in the doctor’s office. Our regular and fantastic pediatrician was on vacation, so we were seeing his partner, Dr B, for the first time. Purples, blues, pinks and greens tainted Savannah’s beautiful fair skin. The bruises and knots and scrapes started in the center if her forehead and littered one cheekbone and her chin. They covered her arms and legs and torso, even the tips of her feet were tarnished. The deepest stains were on the sides of her hipbone, from punching herself; the tender length of the outside of her arm between the wrist and elbow, from slamming her arm on the floor, the table, the chair; and above her Achilles’ tendon, from repeated beatings into her footboard.

My bruises seemed minor only to hers. They fell across my skin, down my arms and legs and back and hips and shoulders. They were from punches and kicks and bitings. My muscles ached, and my flesh was tired. My body seemed fueled by adrenaline and fear. The fear coursed through my veins, making me jittery. What if Dr. B didn’t believe her bruises were self-inflicted? It did seem unbelievable that this beautiful little seven year old child could inflict this on herself. The fear we could be blamed was poison. I held my breath and bit my lip.

As we talked with Dr. B, it hit. A full blown, albeit short-lived, episode. She lunged and screamed and threw her head into the wall. John tried to pick her up. She scaled him, still wailing and kicking and beating and biting, until she finally passed out. The doctor turned to me. “You realize this is not normal?”

I exhaled. Dr. B understood, and the process of pediatric psychiatrists to medicate for self-abuse began.

It’s been four years. Medications have helped, although it fluctuates. There are always adjustments to be made and tolerance levels change. Some days are great, others are as difficult as before. As I sit and look and the recent bruises staining my thigh and as I ice my wrist, I remind myself it’s just one day. This used to be everyday. I cling to the hope or prayer or whatever it may be, that tomorrow is back to better and not the beginning of a decline that tells us its time to change medicines once again.


Too Many Miles

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Joseph and I were driving down the street, on our way to CVS, then to pick up Savannah, then to horseback riding, then to occupational therapy. It was an incredibly busy, typical Wednesday. Savannah had allowed me about four hours of sleep, and so I had picked up a toxic 20 ounce vice if classic Coke, hoping the sugar rush and caffeine might keep me awake. Besides, I was fighting off the back-to-school muck Savannah had brought home and knew the carbonated water would soothe the sandpaper coating my throat.

As we hurried down the road toward CVS, I opened the coke, releasing a sticky caffeinated geiser. It spewed over me, drenching the driver’s seat, morphing the steering wheel into a sticky mess. Joseph stared at me wide-eyed. I looked at him, his large eyes waiting for my reaction, uncertain and stunned by the carbonation that still trickled down the bottle, over my fingers, staining my thigh. I couldn’t help but laugh. Joseph began to laugh, forcing me to laugh harder and him to laugh harder, and it cyclically continued.

Since then, I’ve been reminded of our Mayo visit. Somehow, in Minnesota, every meal I managed to spill something. I don’t know if it had to do with the fact that Minnesota has amazing food or the fact I was suffocating in apprehension or just that I was food-clumsy, but every meal created more mid-west laundry.

Our Minnesota week was hard. The air was filled with the fear of what we might find. We carried the burden of entertaining the kids in a hotel room that was much too small. We lived surrounded by needles and tests and sterilization. We also lived surrounded by doctors, waiters, and strangers who were full of compassion and respect. We held the blessing of new friends and fellow patients and magic book-men. We breathed in the knowledge of some of the world’s greatest specialists.

We were trapped in a great freedom.

It is impossibly hard to be miles away from the only people searching for your answers. And yet all there is to do, is wait. Wait and take selfish advantage of every moment. The dual mitochondrial genome analysis takes six to eight weeks. I thought it was difficult to wait the few weeks for the NPC, now there are weeks more to wait. The tests can’t even be run at Mayo and have been sent off to Baylor. There’s nothing else to be done. Still, even though it’s only waiting, even though the tests aren’t even there, it’s too many miles away.


Squeals of Friendship

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Madeline was born six months after Savannah. My best friend, Elizabeth, and I were thrilled that our little girls would grow up together and would also be best friends.  They would roll a ball together, play tag, go to school, keep secrets, whisper about boys and first kisses and in decades sit on the couch and hold their daughters together.  They would have the benefit of having a sister, even if we had no more children, the same way we were.  Best friends, best sisters, and they would get to experience it from infancy.

The day Madeline was born, Savannah sat patiently with us in the hospital for hours. She had spent the last three months lying on Elizabeth’s stomach, feeling Madeline move. Squiggling on top of her stomach, while Madeline would squiggle below.  Reaching for Elizabeth’s bulging belly each time she saw her.  Finally, a man covered in blue scrubs headed our way. He pushed a small sterile cradle with one nicely wrapped blanket. Savannah squealed and screamed and tried to climb out of my arms toward the bundle he pushed. A little bundle of Madeline. Savannah banged on the glass and laughed, as we watched Madeline be cleaned and measured and weighed. She was re-swaddled and returned to her rectangular crib, but Savannah’s banging and giggling and striving to reach her continued.  The thrilling squeals of friendship didn’t stop until she was held next to the sleeping swaddled bundle. Savannah’s excitement was unbelievable and undeniable.

When Madeline was about two months old and Savannah eight months old, Savannah and I had our first visit to their home. Savannah tried to play with Madeline, but Madeline was only confused by her. Savannah tried to help Madeline take off her socks and gloves. Those horrible, suffocating socks and mitts that Savannah couldn’t stand to inhibit her senses. Madeline, however, loved the comfort and coziness they provided and kicked and cried each time Savannah tried to help her out of them. That evening, the girls feel asleep in our arms, as we sat and watched a movie. Elizabeth and I laughed at the irony. We had known each other for a decade, through high school parties, college parties, first kisses and late night dates. We had fought and loved together.  We had seen each other through broken hearts, marriages and home ownership.  What a different world we had entered into together. The night was perfect, as we held our daughters, drinking hot tea instead of beer. We thought it would be the first of many, but it was the first of few.

There were a few times we went to the arboretum or relaxed and played at each others houses, and of course there were birthday parties. But it wasn’t near what it should have been. We were busy with life. The life we hoped to share together began to keep us apart.

Savannah didn’t develop like Madeline.  At seventeen months, Savannah stopped talking and refused to eat.  By twenty-two months she was receiving services.  At that time Madeline was sixteen months old.  Madeline was playing tag and rolling balls and eating everything she could reach.  Savannah spent her mornings in therapies.  Madeline spent her mornings making friends at day care.

Elizabeth and I have known each other over two decades.  We live worlds apart, but have never been closer.  Living in different states, we text multiple times a week, keeping regular conversations. We do visit, but not as much as we would like. We have been through divorces and affairs and family deaths together. We love each other’s children, life family, and our children have learned that love from us.  We are family, despite blood and distance.  But Savannah can’t play with Madeline the way she once could. The desire is there, but so is the disability. Madeline can talk and cook and bathe herself.  She enjoys music and TV shows that aren’t preschool motivated. There is a world of difference between them. A world that’s hard to explain to a ten year old. A world that is hard to explain to anyone. Honestly, Madeline is confused by Savannah and understandably so. Fortunately, Savannah has yet to notice. She has only noticed the love.

Even though the girls adore each other, and a vibrating excitement drips from Savannah each time Madeline visits, it isn’t like we thought. It isn’t picnics and lipgloss and cupcakes. I dream about that distant idealistic night, watching a movie and holding our sleeping daughters, and I know for one moment, it was perfect.


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