Broken Jaw Birthday

Story #30 in the book.

I was called over the intercom in my classroom on Rose’s birthday. The message was “Get to the high school.  She’s in the gym.” I zoomed to my car and drove across the street. I cried on the way. Really? On her birthday? Can we not have this special day without a seizure?
I arrived to find Rose on the hard, wooden gym floor with a stranger’s sweatshirt under her head. It was covered in blood. The other students looked sad and afraid. I tried to put on my ‘brave mama’ face, but I am sure my red eyes told the truth.
I forget how I got her to the car. I am sure it involved a rolling chair and handing my car keys to someone I barely knew to drive my car to the curb. Trauma does some memory editing. My only memory is of her bloody face and swollen jaw.
I drove Rose to the Emergency Room. This was one of those times when I put on a comedy routine in the hospital. Rose was my straight-man sidekick. She was a real diva. She demanded warm blankets and bigger pillows. I remember asking the nurse if she realized that there was a ‘Princess Patient’ in her care. Rose did not think my hysteria was funny. I think the nurse was afraid of us both.
Her jaw was x-rayed. The results were said to show no break, but you could look at her and tell that was not true. No point in arguing with an x-ray. After the x-ray came the stitches.
Before the work began, there were those awful numbing shots. Poor Rose handled them like a champ, despite her diva-ness. Her chin had a inch-long split just underneath her lower jaw, right in the middle. An amazing doctor made tiny, perfect stitches as though he were quilting. I was amazed at his skill and precision. I told Rose that I wished she could watch him working. She would have been fascinated.
So this is how Rose spent her birthday that year, getting x-rays and stitches. No party, no pity.

Seizure Mama Speaks Now

Rose’s jaw really was broken despite the x-ray results. This lead to TMJ (temporomandibular disorder) later. Our suspicions were confirmed weeks afterward by her orthodontist. She also had crushing of some roots of teeth in her lower jaw.
I want to point out how important it is to pay attention to everything that goes on in a hospital, even if you are squeamish. I watched every stitch by this doctor. I appreciated his skill and carefulness. He knew that he was working on a young girl’s face. He wanted to make sure the scar would be minimal.
This was not the case with Rose’s last experience with stitches. I knew they were being done haphazardly by a Physician’s Assistant. I joked that we would like thirteen stitches because that was Rose’s lucky number. She should have gotten thirteen tiny stitches instead of the eight big ones she received. This injury was particularly bad. I really did feel faint as I watched, but faked my way through, again.
The stitch-witchery was confirmed by a doctor who worked in dermatology during the follow-up appointment. The stitches were too big, too tight and too far apart. Thankfully the cut was on her arm, not her face. The wound did not heal properly and the scar has widened. It looks like a three-inch-long fish skeleton, minus the head and tail. This story will probably be near the end of this book. It’s hard to finish this thing when the stories keep on coming.

Mary and her Damn Lamb

Rose was in the hospital for about a week due to her newly found kidney stones.

I stayed with her most of the time, only going home to shower and do laundry.

Days spent in the hospital are trying, but the nights are torture.

I had to sleep in a malfunctioning recliner beside Rose’s bed.

It would barely remain stretched out if you kept your back straight and applied force against it.  If you shifted the wrong way during the night, it shot into the sitting position, giving one quite a rude awakening.

Another issue that prevented a good night’s sleep was the nurse parade that came in at random times to check the IV machine.  If Rose moved to pinch the line an alarm  would sound.

None of these irritations compared with Mary and her Damn Lamb.

Across the hall was a patient who was not supposed to get out of bed, so the bed alarm was turned on.  Every time he got up, the bed played the tune of the children’s nursery rhyme “Mary had a Little Lamb.” This loud music alerted the nurses that the patient was being non-compliant.

Rose’s room was on the pediatric floor of the hospital. This story might make you smile, but there is a sinister twist to this tale.

While trapped in the hospital for days, I would silently slither out of Rose’s room while she slept to see different scenery and search for snacks. During one of my sneaky forays, I heard the nurses discussing this patient across the hall.

He was not a child. The hospital had no room for him in the Psych ward. Until a space opened up for him upstairs, he was across the hall from my Rose.

So every time I would hear “Mary had a Little Lamb”, I would wake up and watch Rose’s door; prepared to catapult myself from my dysfunctional recliner to protect my baby from some psycho.

Sleepless SEIZURE MAMA

 

Halloween in the Hospital

Story # 25 : Halloween in the Hospital

On October 27th Rose started vomiting. It continued for hours despite applications of the anti-nausea gel to her forearm. I finally packed her up and headed to the pediatrician’s office. He did not seem as alarmed as I was. He asked what I thought should be the next course of action. I replied that the next time Rose vomited, we were going to the emergency room. I told him that I knew something was really wrong with her. I did not know how I knew, but my “mama gut” was screaming. This doctor had known us for years now. He knew Rose’s history and he knew I was not an alarmist. He decided to send her on to the hospital to be admitted.
We were quickly checked in to a room. The nurses tried to start an IV. They could not get a needle in because Rose was so dehydrated. The IV supervisor was called to get one started. It was at this point that I realized that Rose’s face looked wrong. Her lips were too big and her eyes looked sunken. This is why I felt panicked. Her face was deflated due to dehydration.
The vomiting continued. They asked Rose her pain level on a scale of 1 – 10. She calmly replied 8. The nurses were startled by her response. She had not mentioned being in pain. She remained stoic through all the poking, prodding and x-rays. The suspected culprit was an intestinal blockage. To everyone’s surprise, two kidney stones were spotted. One was blocking a ureter. It needed to be removed immediately. A local urologist was called to perform the surgery on Halloween Eve.
When Rose heard that she was going to miss Trick-or-treating, she broke down. This brave ten-year-old patient boo-hooed like a baby. The nurses felt so sorry for her that candy and gifts began to show up in her room. Folks at our church were alerted. A giant bag of assorted candy was collected from the Trick-or-Trunk event. She got more candy than ever.

Seizure Mama Speaks Now

First, I would like to say that you must trust your “mama gut” even when you do not consciously know why you are alarmed. That instinct is like your hard drive. Even though the information is not on your “screen of consciousness” you still get a vibe of alarm. Even though I was not trained enough to know the signs of dehydration, I still recognized that something was physically wrong with Rose.

I would like to add that the following Halloween, Rose dressed up like a witch and delivered packs of candy to the pediatric floor of that hospital. The nurses were thrilled. They, of course, got to share in the spoils. Rose remembered how sad she was to miss Halloween. She wanted to make sure that the kids stuck in the hospital did not feel left out. This is what the seeds of pain can do. They can grow into love and bloom with kindness. Just like my Rose.

Toxic with a Timer

Story # 22: Toxic with a Timer

Rose’s latest drug combination became a recipe for disaster. She was dizzy and nauseated. She was limp and barely moved or responded. She was silent. She was being poisoned.
We put her on the couch, so that we could all keep an eye on her. She was on three drugs. One was an extended release form. One drug must have amplified the affects of the other two. Her nausea and vomiting turned to dry heaves and bile. Seizures were clustering. We knew she was in danger.
We called the on-call neurologist at about 11PM. The conversation was difficult due to the doctor’s foreign accent. My husband and I were both on the line listening. We thought the doctor said to use the emergency drug if Rose had another seizure. Then we were to take her to the Emergency Room if she had a seizure after that. Was that really what the doctor said? Two more seizures and then the ER? Really?
The next morning Rose was very pale, weak and listless. She barely moved. We tried desperately to get her to eat and drink each time that she woke up. She was fading before our eyes. I called the doctor’s office to report her condition. I broke down as I explained that we felt she was being poisoned by these three anti-convulsant drugs and still seizing.
The wise nurse calmly told us to get a timer. She said to set it for twenty minutes. Every time it went off, we were to wake Rose up and make her sit up and sip some water. We set and re-set the timer all day long. For hours we watched her and waited for the bell to ring, over and over.
Hours later she began to improve. The poison was being diluted. Rose was re-hydrating. The color came back in her face. She was safe. No trip to the Emergency Room required.

SEIZURE MAMA SPEAKS NOW

We kept gel in the refrigerator to put on Rose’s arm for nausea. There were several times when her vomiting lead to seizures because she had thrown up her medication. We always sifted through her vomit if it occurred soon after a dose. I know this seems gross, but you need to know whether a dose needs to be replaced or not. Doubling a dose may be worse that missing a dose. You need to know.
This particular situation was the exact opposite. Rose was sick and seizing before throwing up. Her dosages were too high. The combination was too much. She was listless and unresponsive. I still distinctly remember this because I was so afraid.
Know your child’s dosages and drugs. If you do go to the Emergency Room, drawing blood levels may be an important piece of information for the doctors involved in the treatment.
We wrote down all dosages on a calendar and used a pill organizer. There was no guessing about the medications that were taken. We also recorded how the dosages affected her. This information was used to convince the neurologist that she needed a different drug or combo. Do not count on your memory. Write it down.

 

SEIZUREMAMA

Kind Kids

Story # 21: Kind Kids

Of course epilepsy came on vacation with us. Rose had three seizures during our week at the beach. Two occurred while swimming in the pool. She always wore a life jacket while in the water and someone stayed an arms-length away. I know it seems risky to let her swim, but she loved it so much. We live on a lake so we swam a lot. We could not forbid Rose from participating in something we all enjoyed together. If she seized in the water, we just held her until it was over and carried her out to a lawn chair to sleep afterward. We suspected that extreme temperature changes triggered seizures. We tried to avoid the water in the mornings when it was cooler. We also covered her with a towel when she got out so she would not get chilled.
Rose also loved the ocean. Swimming with her among the waves made me a complete wreck. I was afraid we would both go under if she seized in the ocean. She was content to go in for only a few minutes and then play in the tidal pools with her shovel. She also enjoyed searching for little fish and shells in these pools.
Rose and I had just walked down onto the beach and picked our spot on the edge of a tidal pool. I set down our bags and towels just as Rose fell face first into the sand. She had sand on her face and in her mouth. I placed her on her side to seize, as I tried to wipe off some of the sand that stuck to her face. A nice lady nearby offered me a bottle of water to wash her off with. The seizure soon ended, but Rose was covered in wet, sticky sand. I swaddled her in a towel and sat close beside her to wait out the thirty minutes or so it would take before she woke up. My family could see us from the porch of the condominium, so I knew help would arrive when someone spotted Rose lying still under a towel.

While I was sitting quietly beside Rose, two boys about her age walked by. They were carrying a surfboard, table-fashion, covered with an assortment of shells and seaweed. They both glanced at Rose as they walked by. They put down their board a ways down the beach and walked back to me. They asked what was wrong with Rose. I explained that she had just had a seizure, but would be fine when she woke up. We talked about the treasures they were carrying on their board. I shared that Rose would have loved to have seen their haul from the sea, if she had been awake. They walked back to their board. One returned carrying a giant pin shell. “Give her that when she wakes up”, he said. We still have that precious shell.

SEIZURE MAMA SPEAKS NOW

There will be children who do not understand epilepsy and seizures. There will be children who will be afraid of your child after seeing him/her seize. There will be a stigma. It will be harmful and painful.
There will also be children with great kindness. They will be protective of your fragile child. They will be loyal friends. Relish the memories of the kind kids. They are the angels of this broken world.

The Seizure Cycle

The drug roulette regiment made everything worse. Rose was not Rose before a seizure or after a seizure. She was lethargic, floppy and dopey. She moved from her bed to a chair to another chair and back to her bed. The seizures came with us wherever we went. She seized in restaurants, at birthday parties, at Brownies, in the yard, watching television, in Walmart shopping for a helmet, at family reunions and even in swimming pools.
We took a plastic Adirondak chair with us on outings. The chair reclined slightly, so she could seize in it without falling out. Every party was BYOC (bring your own chair). The seizure bag went with us everywhere. We evaluated the risks of each outing. Should we go eat at this restaurant? No, it would be too hard to carry her out through the gift shop. She we go to a ballgame? No, seizures in bleachers is too dangerous. Should we go? No. By this point, we basically stayed home waiting for the next seizure. I really wanted to buy a little wheelchair, so we could go places, but was advised against it by other family members. She would look handicapped. She would feel handicapped. Yes, but she would be safe.
We walked everywhere attached to her. A fall could come at any second. We went up and down our stairs as a unit, so she would not fall. We called this method ‘stair pairs.’ When no one was in the room with Rose, the person in charge of her would whistle two notes and she would echo the two notes back. We whistled about every three minutes. It got to be so much of a habit that I would catch myself whistling notes when she was not with me. She slept with me during these terrible months. Sometimes she would whistle in her sleep. We whistled so we would not have to keep calling her name. We referred to this as ‘echo whistling.’ If she did not repeat our two notes, we would call her name. If she did not answer, she would rush to find her. Most of the time she was too busy to answer, but sometimes she was unconscious. It was these times I would always feel guilty about leaving her alone. Negligent for three minutes.
Take a chair everywhere, echo whistling and stair pairs. This is how we kept her safe as the seizures took over our lives.

The Painful Appointment

This is story #19 in the book.

We had felt good about this neurologist in the beginning. This doctor was  cordial, observant and thoughtful. We had previously left all our appointments with several written plans of action in case the first choice did not bring the results that we hoped for. If plan ‘A’ did not work , then we also had plans ‘B’ and ‘C’, if needed.  But now we felt like Rose was part of a chaotic experiment without planned strategies or goals.

Rose had a long and strong seizure the day before this appointment. She slept on the way to the doctor’s office. Rose wouldn’t hold her head up during the visit. The doctor seemed not to notice Rose’s lethargic condition. Instead, I was scolded for the numerous calls I had made to the neurology nurses. The doctor mentioned wanting another EEG(electroencephalogram) and the possibility of a VNS (vagus nerve stimulator) placement.

We were taken aback by these suggestions. We thought we had come for a much needed plan for our next trials with different medications. Instead it seemed that we were at the end of the medication regiment and headed for surgery. Our instructions when we left the office were to stay on drugs 3S and 4L. Stay on these two drugs that do not work? What we were doing was not working. Why were we not doing something different?
Here was our nine year old daughter slumped down in a chair, pale and unresponsive and we were supposed to continue on these same drugs and dosages.

We left to office and went downstairs in the building to eat lunch at one of Rose’s favorite restaurants. Rose’s hand was so shaky that she couldn’t use a fork. I had to feed her the slaw. I was feeding my nine-year-old because she could not feed herself, but there would be no change in her treatment? Absolutely not!
We all went back upstairs to the doctor’s reception area. I was so shaken that I could barely speak as I explained to the receptionist why we were back. We had to wait until all the other families had their appointments before the lunch break. It was interesting watching all the other struggling families while we waited. One father was irate and loud about a mistake that was made.
Finally, we got to speak with the doctor again. There was a new plan when we left. I had the doctor write down. I still have the paper. Rose was to go down on drug 4L, off of drug 3S, re-add drug 5K and add on a new drug 6Z. Was this a plan or a punishment?  This was like playing a game of random roulette with strong drugs on a young child. Was this new plan better than no change? Hang on. It gets worse from here.