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.


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.


Tornadoes in her Mind

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The final results of last year’s Mayo Clinic tests, cumulatively over 500 degenerative possibilities, came back negative December 28th. There it sat in our mailbox like some generic Christmas card. Typed up, mass produced, a statement of facts all combined to carry the wishes and blessings we hoped for.

As wonderful as the news was, it left a gaping hole of what was next? For six months I had lived with the fear my child was dying, waiting for the why and the when, clinging to every moment and feeling guilty for the times when I didn’t. Now what?

It does seem to be the pattern. Every test, every doctor, every hope ending in a new beginning. A new quest. A new start down a different road that is yet to be found.

Our next path is to retrace an old one. We are headed back to the Mayo Clinic for yet another MRI and EEG in the doubtful hope that this EEG will be successful. It will be our third. The first was inconclusive but didn’t show signs of seizures. Four years later, Vanderbilt re-visited the EEG. They wanted an overnight EEG. After an hour and a half, Savannah woke mid-panic attack, swiping the leads from her head in one swoop of her tiny arm. She proceeded in full panic form to rattle the metal railing and toss the nightstand across the room. We were kindly escorted out at 1:00am. We were assured that enough data was gathered to rule out seizures.

Seizures were an early concern. Spontaneous loss of skills is commonly the result of brain trauma or seizures. But we haven’t found either.

A few months after the Christmas news sunk in, I met with Dr. S and spoke with Dr. T. Dr S was stunned by the negative test results. “That can’t be,” he responded. “I’ve seen this child for years. I’ve seen the regression.” I bounced Dr R’s idea of revisiting the EEG for forty-eight hours. I can’t imagine forty-eight hours of leads and wires when Vanderbilt couldn’t accomplish two hours of it. Dr. S made the point, “It’s like chasing tornadoes. You can see the devastation after a tornado but its hard to pin-point exactly where a tornado will hit beforehand, making it near impossible to catch.” We may not have seen or caught the tornado in her mind, but we can see the devastation. We have to at least attempt to catch the tornado and the longer the leads are on, the better the chance.

Dr T informed me that there are certain types of seizures that exhibit in violent and aggressive outbursts, and seizure hallucinations present differently than regular hallucinations and would not have been noticed at her time in the Vanderbilt Psych Unit. More options. More hope. More needles to grasp at in the hay.

But I have to know.

There was an ancient belief that to name something was to claim power over it. That’s what I need. I need to name this demon that strives to steal my daughter from me. I need to know the medicines, the therapies, the daily life modifications are what they need to be. I need to know what life will look like for her 20 years from now and how to make those decisions. I need to know there will be a 20 years from now.

So we are headed back to Mayo. Back to Minnesota and beautiful countryside and incredible food. We are headed back to the beginning.


Bowling Without a Safety Net

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There’s no way to know what to expect. There could be a melt down or an aggressive episode or a potty accident. On the other hand, there’s no way to know what to expect. There may be stares, judgements or ignorant words that hurt nonverbal feelings.

Every outting is a gamble. There’s no guarantee nor predictability. All I can do is consider if there’s a possibility Savannah may enjoy it and be prepared with an exit strategy.

Last night we went bowling. Not Special Olympics Bowling. Not bowling with the expectation of disabilities. Not bowling with a safety net. We went bowling. Ordinary bowling alley with ordinary kids on an ordinary Tuesday. . . Well, it was suppose to be an ordinary Tuesday. Instead, it became the Tuesday we went bowling.

Savannah’s brother is a Cub Scout, and all families were invited to bowling. All families. All parents. All siblings. And so we went.

At first Savannah was overwhelmed by the noise. We lingered in the entry way, enjoying the rubber duck collection in an arcade game. And then in happened, her brother’s den leader came over to say hi to Savannah. She visited and admired the ducks with Savannah before returning to the boys. Then the assistant troop leader came over and said hi to Savannah while trading in her shoes.

Shoes.

Once Savannah saw the bowling shoes, she was ready. Once her shoes were on, we cut through the noise and crowd and to the Scout lanes. She only bowled three frames before she was ready to leave with a large proud smile, but while there, with each throw, the Scout parents cheered. It may have only been three frames, but they were three successful frames. Three frames that taught me, we could bowl again.

There’s no way to know what to expect. There can be smiles and bravery and bowling. On the other hand, there’s no way to know what to expect. There can be acceptance and cheers and hidden blessings.


Shining Beyond Limitations

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Another year. Another new challenge. Many new challenges. New challenges and old challenges mingling together, becoming inseparable, strengthening each other.

Another year. Another new joy. Many new joys. Easily overshadowed by the challenges, but there all the same. New joys and old joys slipping in unexpected, hiding in the moments, waiting to shine.

Another year. Another Joy Prom.

Weeks before the event, I received a phone call to see if Savannah would like to try on a donated dress. I could only laugh. The previous year Savannah had a “fancy” dress. Bright pink and puffy and crinkly. She giggled and squealed and wore it for days. Until the day of Joy Prom. That day it was vehemently thrown to the floor and replaced many times over until a common cotton house dress took its place to the formal affair.

Fashion is Savannah’s thing. She puts things together I would never consider and wears them better than any model. Winter boots and mini skirts. Glitter and plaid. Sparkles and joy.

Sure. We could try some donated dresses, but I had no expectation of her wearing one. Little did I know there was a dress waiting for her to find it. Waiting only for her. A soft pink dress, with golden sequins and a brown bow. A dress that would look amazing with knee-high, thick-heeled, clunky black boots.

And it did.

Like every year before, the night began with the magical red carpet entrance. Savannah entered, escorted by her Dad and Grandaddy. The flashes popped. The crowd cheered. The princess smiled. She buried her head in her arms, closed her eyes, and began to shine.

Savannah shined in the horse drawn carriage, shined as her nails were painted in sparkles, shined in the flashes of the photo booth. The sequins of her gown shimmered and glowed, as her boots carried her through the crowds. Her inner princess shining through. One high school boy, a personal crush of hers from the summer, took a double-take, turning and watching her walk by. True to tradition, his mouth fell open a bit. The sequins and the boots and paparazzi atmosphere had transformed her from disabled to unattainable.

Then came the new challenge: the Carnival Games. Savannah approached the carnival area hesitantly. Her skeptical eye and nervous pace answering each plea and coax to convince her to enter. Until finally, with trepidation looming, she did.

The joy she found surprised us all.

She was first greeted by an orange balloon poodle, made just for her, the girl terrified of dogs. And she loved it. She loved the horrid bright color that clashed with her dress and the smooth rubbery feel between her fingers. Most of all, she loved the way he looked as he tumbled from the sky each time she helped him become airborne with a squeal. Savannah carried him with her to the corn hole games (which she surprisingly won!) and to walk the cake walk (which she thought was great!) and to the parachute play (which she insisted he ride on!). The orange balloon poodle never left her. Weeks later, he is still sitting next to her favourite chair, half-deflated, waiting for her return from school.

The night ended in style with Savannah’s first limo ride, around the church parking lot and to our car. Night was falling, the church was emptying, and yet Savannah could have kept partying. She had stayed the entire Prom.

Another first. Another challenge overcome. Another joy.

Each year Joy Prom brings Savannah something new. New challenges and new joys. New friends and old mingled together, becoming inseparable, loving her stronger. It gives her the opportunity to dress up and be noticeably gorgeous instead of noticeably disabled. It gives her memories that can sparkle through her dreams for years to come. It gives her a chance to shine beyond her limitations.


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/


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