Tag Archives: Regressive Traits

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.

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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.


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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