Tag Archives: Seizures

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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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.


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