Story #30 (November 2003)
Kidney stones in a ten-year-old girl are quite unusual, but this was an unusual girl. The kidney stone that blocked Rose’s ureter was surgically removed. The other was later pulverized by lithotripsy. Rose was sent to yet another specialist in another city. This urologist happened to be at the medical complex where Rose was now a regular as an epilepsy patient. We joked that she was like the character “Norm” in the sitcom Cheers when she arrived, “Everybody knows her name.” Our little sickly celebrity.
Rose’s trips to the specialist included bringing a jug of urine which had been collected with the help of a big “plastic hat” in the toilet. The jug was kept in the refrigerator. Urine in the refrigerator, hats in the bathroom-ours was not a usual home.
The chemical content of the removed stones would give us some indication of what might be causing them. We later would learn that the culprit was our latest beloved drug 6Z. We wanted to keep Rose on this drug because it was actually working. Could we keep the drug, despite its causing the stones?
The urologist’s response to that question was that we would end up “shoveling sand against the tide.” He described the stint that had been removed after her kidney stone surgery as being completely encrusted with crystals. The stones were definitely a side effect of her medication. Seizures or stones. Those were our choices.
Now that we knew the cause of the kidney stones, we had to go back to her new neurologist to pick out a new epilepsy medication. Rose was weaned down on drug 6Z and drug 7Z was added to her daily cocktail. Would this new drug control her seizures? Would it bring new side effects? We never dreamed what would happen next. We were getting used to expecting the unexpected, but even I got blown away by this next event.
Seizure Mama speaks to parents:
We were way out of our league by this point. I knew nothing about kidney stones. I did not understand how an anti-epilepsy drug could cause them. It has taken me years of reading to know what I know, which is still very little. Drugs contain the compounds that perform certain functions and other parts that are in the mix for other reasons. I think of them as dirty drugs. The part that stops the seizures is the good part. The part that causes the side effects is the dirty part. You can keep asking questions of the specialists, but you probably won’t understand the answers. Do not get frustrated with them or yourself. Sometimes you just have to trust these folks that have spent years studying something that has just appeared on your radar.
Rose is home. Let the holidays begin!
Story 30 (November 2003)
Rose was in the hospital for about a week due to her 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 remain stretched out if I kept my back straight and applied force against it. If I shifted the wrong way during the night, it shot back to the upright position, giving me quite a rude awakening.
The other 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 and pinched the IV line, an alarm would sound to summon a nurse.
None of these irritations compared with “Mary and her Damned Lamb.” Across the hall was a patient who was supposed to be confined to his, so the bed alarm in his room was turned on. Every time he got up, the bed alarm played the tune of the children’s nursery rhyme “Mary had a Little Lamb” to alert the nurses that the patient was being noncompliant.
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 sneak out of Rose’s room while she slept to see different scenery and search for snacks. During one of my silent forays down the hallway, 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 to wait in the room 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 Rose from the psycho.
Sleepless Seizure Mama speaks to parents:
Staying in a hospital for long periods of time can send you to the edge of the “crazy cliff.” My husband and I learned to take turns for overnight stays. I packed my little blanket and sleep mask. It is almost impossible to get good sleep in a hospital. The nurse parade during the night is a necessary evil. Sometimes I would awaken to see a concerned nurse looking at me crying in my sleep, something I did not allow myself during the day.
There are far worse ways to be awakened in a hospital however,like when a “Code Blue” announcement is sounded. My heart would pound for minutes after these alarms, as I prayed with all my heart for the patient in crisis and the brave professionals rushing to try to save them.
Things are finally coming together.
Story 29 (October 2003)
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 knew something was really wrong with her. 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 into 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 discovered instead. 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 to parents:
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. Although I was not medically trained to know the signs of dehydration, I 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 last Halloween. She wanted to make sure the kids stuck in the hospital this Halloween did not feel forgotten. This is what the seeds of pain can do. They can grow into love and bloom with kindness.
Story #28 (October 2002)
It was past time to put all the cards on the table. We needed answers about where these seizures were coming from, why they were occurring, and what triggers were unleashing them in her brain. It seemed we had been trying to put together a puzzle without looking at the picture on the box. Would a stay at an EMU finally reveal the whole picture? Could we handle the whole picture when we got it?
Would this epilepsy monitoring unit give us the answers we needed? Would the electrodes finally locate the source of these electrical storms inside Rose’s brain? I felt like these hundreds of seizures were clearing pathways through Rose’s brain, so that the seizures could go farther and faster, like there was some kind of cumulative effect.
I was truly afraid of weaning her off her medications. Would these seizures be allowed to run unhindered through her young brain, or were they doing that all ready? All we knew was we were in the right place to get answers. We had faith in this hospital and its doctors and nurses. That in itself was a great comfort to us, even Rose. We needed expert help and now we were closer to getting it. Risks or not, this was no life for Rose. She needed fun instead of fear.
The technicians that glued the electrodes to her head treated it like a spa treatment. Rose emerged with a lovely, long ponytail of colorful wires. She felt pleased and pampered. A gauze cap had to be wrapped over her head to keep the electrodes in place when she lay down. No matter, her flowing ponytail was a hit. The other end of the electrodes were hooked to a box in a pack that she wore allowing her mobility.
During our week-long stay, Rose had six seizures. It took four days of weaning down on her medications to get them started. Those last days were scary. Once the data was collected, some medications were returned, but on low dosages. I knew these dosages were too low. I showed one of the doctors our chart which showed that Rose had experienced a long and strong seizure on the same particular mix and dosages that Rose was leaving on. Dosages stayed low so a long seizure followed shortly after we arrived home. Emergency medications were used. A call was made back to the EMU, dosages were then raised.
I am a doctor’s nemesis. I am the mom with the clipboard and pen. Once during our EMU stay, a senior doctor came into Rose’s room with a group of medical students. I rose from my chair as they entered, clipboard and pen in hand. “Oh no!” slipped from the doctor’s lips as he saw me. I stood in the circle with the young doctors as they discussed Rose’s case. Mama and the medical students formed a circle around her bed, all of us trying to learn-they to save the world, me to save my daughter. Bless us.
Seizure Mama speaks to parents:
Weaning off medications is a scary necessity in the Epilepsy Monitoring Unit process. Without the medications masking the brain’s electrical activity the electrodes can detect what is happening. In the Phase I process the electrodes are glued to the outside of the skull. These sensors show the brain’s activity as squiggly lines on an EEG. These external electrodes cannot detect activity deep in the brain. This Phase I process lets your team see what is going on in the brain as the patient is doing different activities, including sleeping. Do not be afraid of the electrodes and glue. The glue does wash out eventually. You may need to use an oily substance, like mayonnaise, to remove it.
Do not expect answers right away. The team must meet together and discuss the results before considering the next course of action. This may take weeks. Be patient. Take comfort that more trained professionals are trying to help your child.
As I am putting the finishing touches on our book,
I keep telling myself to “remember my audience.”
I want our book to help parents of children with epilepsy.
I have honestly documented events in our lives.
I have added a “Seizure Mama Speaks to Parents” after each story.
A letter to parents begins the book.
An epilogue tells about writing the book and blog.
The last chapter is about letting Rose go it alone.
That was always the goal.
What else do you need parents?
I am thankful to have this blog,
so I do not TOTALLY feel this is our ONE SHOT.
I want to do this right.
HELP ME HELP YOU.
I need honesty from my “OTHER MOTHERS.”
Seizure Mama/Flower Roberts
Image by our fabulous publisher JAHBookdesign. Just the beginning…