Two Down One Night

The day of Rose’s college graduation finally arrived. She was super excited. There were over four hundred graduates and she was leading the line. She looked glowing in her cap and gown with gold tassels and sash. She had worked hard for this day for six years. She had taken classes at the community college part-time and worked at a restaurant just down the street. This ceremony was a victory for all of us.
We arrived early so that we could save the entire front row for family and friends. I was there with my camera to get photos of Rose and her fellow students as they paraded past. I knew hundreds of these students. It was like a reunion for me. What a wonderful night for our family. My parents could not attend due to mobility issues, but my sister was there, along with Rose’s  dad, aunt, uncle, cousins, brother and her other set of grand parents. It was a big event for the whole family. One we thought we may never witness. But here we were watching our Rose. Smiling brightly as she lead the line of graduates to their seats. She looked so happy and beautiful.
The ceremony was really long, but I enjoyed watching many of my former students marching across stage. I felt like I was graduating, too. In a way I was. I would no longer be driving here every day and spending hours in the library, the science building and parking lots. Our time here was officially ending. Rose had a plan of what to do next, but I did not.
The ceremony ended. There were more photos and many hugs.  As we were all parting ways, my sister’s phone rang. Our parents’ neighbor called to tell us that our mother had fallen down some steps backwards. She was being transported by ambulance to a hospital. The neighbor was driving my dad to the Emergency Room. The hospital they were going to was over an hour’s drive from where we were. We decided not to share the news with Rose. We wanted her to have this special night without the worry.
My sister and I raced to her car.We stopped by my house to pack a few things before heading to the hospital. I was rushing around my room tossing clothes in a bag when my cell phone rang. The man on the line stated that he was with the Emergency Medical Services. He told me my daughter had fallen and gotten injured. “No.” I said, “My mother has fallen. We are on our way to the hospital now.” “No ma’am.” he replied “Your daughter has had a seizure and gotten hurt.” I collapsed on the bed screaming. My sister rushed into the room. I told the man to call my husband’s phone. I gave him the number. I hung up my phone only to hear another one start ringing in the other room. My husband had left his cell phone at home to finish charging. My phone rang again. It was Rose’s friend Carol trying to find anyone in Rose’s family. I gave her Rose’s brother’s number. Carol called back minutes later to tell me that Rose was fine now. I was hysterical. Lightning might as well have struck me. God PLEASE, I am not this strong! Two people I loved most needed me and I was apart from them both. There was nothing that I could do. Helpless and hysterical! The combo from hell.
My son called the house phone soon after.  He and his dad and run back up the street to the college to be with Rose. Her dad got on the phone and told me to go on and head to the hospital to take care of my mama. My sister drove that hour to the hospital as I rode in silence, wondering why life can’t just come at you in single file instead of a damn Charlie Foxtrot.

SEIZURE MAMA SPEAKS NOW

This is the last story I will post on Seizure Mama.

There are two more. The blog will not get those.

Rose will have to write the sequel to this book herself.
This mama is done.
I began with Rose in a “Hot Diaper ” and ended it with her in a cap and gown.

What’s next is up to Rose. I can’t wait to see where she goes.

We’re tough, real tough!

Rose’s Mama

Hospital Gown to Ball Gown

Rose went back to our favorite hospital’s Epilepsy Monitoring Unit the last semester of her senior year in high school. Her seizures had come back with a vengeance. They were long and strong. She was getting hurt during the falls. She had gone home bound from school due to the falls and injuries.
We were hoping to get new and different set of scans this time. These two SPECT scans together would reveal what was going on in Rose’s brain during a seizure and between seizures. Then the two could be compared. We hoped this new information could help pinpoint the source of her seizures.
Rose arrived at the EMU just two weeks before the prom. We were all hoping to get the results early enough for her to get out and get ready for her prom. Rose’s brother was coaxed into taking her. He planned to come home from college that weekend to be her escort.
Her dreamy satin dress had been purchased and altered, his tuxedo had been rented. All that was needed was to be released from the hospital in time to get there. We thought that surely two weeks was enough time. We never dreamed we would cut it so close.
The story of the scans will have to wait. They deserve their own pages. Rose did get out of the EMU in time for the prom. We checked out on Thursday afternoon, the prom was on Saturday. Rose did get to go. She did get to dance. Her brother was there to watch over her. She had her emergency medications in her tiny purse. We dropped Rose and her brother off at the Civic Center and  we went to wait at a restaurant across the street. Her father, my sister and I were only a phone call away. We had pulled it off in the nick of time.
She looked beautiful. Her hair had roses in it that matched her salmon-colored dress. The bodice was covered in dangling sparkles. The corsage on her arm contained roses and baby’s breath. Our Rose was a princess and a warrior. While her classmates had spent the week getting their nails done and going to tanning beds, our Rose was in a hospital with electrodes glued in her hair.
So after nine days in the hospital, Rose goes to the prom. From hospital gown to ball gown. That is how Rose rolls.

SEIZURE MAMA SPEAKS NOW

Here is an example of balancing needs and wants. Rose needed new medical tests to get information to treat these terrible seizures. We were not going to wait any longer. When the opening in the schedule came, we took it. Rose wanted to go to her school prom. We planned for it and she went. We could relax because her brother was with her and we were right across the street, ready to swoop in. The faculty and her friends knew where Rose had been the previous weeks. No crown needed, she was queen.

A Seizure Dog Sees Rose

One afternoon, Rose and I were shopping in a large department store. Rose was several yards away from me between the clothes racks. I could see the top of her head. I saw her head turn to look at two people and a dog strolling through the aisles in her direction. I knew she had spotted the dog’s vest. I also knew that she would be interested in watching the dog in action.
The big, shaggy hound was wearing a red triangular vest on its harness. The vest was a sign that the dog was a service dog of some sort. Our family had discussed the possibility of getting a ‘seizure dog’ several times. Rose had no aura before most of her seizures. Having a dog that could alert her that a seizure was coming would be a nice warning. Rose could at least get to the floor before falling down.
I watched Rose watching the dog approach. The two adults were deep in conversation. They were paying attention to each other and not the dog. As I stood watching, the dog turned and walked away from the two people. It stopped and stood in front of Rose. I watched as my daughter and this dog looked into each others eyes.
The trainer was surprised by the dog’s behavior. He pulled on its retractable leash and gave a command for it to return to the side of the other adult. The dog hesitated to leave Rose. He paused for a few more seconds, before rejoining his trainer. The two seemed surprised by the dog’s break in training.
I spoke to the two people. I told them that Rose had epilepsy. Their looks of dismay turned into smiles. This gentle giant of a dog was a seizure dog in training. What they first thought of as bad behavior on his part, now took on a different meaning. The dog knew that Rose had epilepsy. His name was Mr. Biggles. He was with his trainer and new owner.
I got the name and number of the company that trained the dog. The threesome continued to slowly stroll around the store. Rose and I looked at each other in wonder. “How did he know?” she asked me.
It was my turn to be concerned. My first thought was that maybe he sensed an on-coming seizure. I told Rose that possibly he could smell the various seizure medications in her sweat?
Either way, I had a new hope for Rose. Maybe someday a dog could help to keep her safe.

SEIZURE MAMA SPEAKS NOW

We have not gotten a seizure dog for Rose during these twenty-four years. We had other dogs while she was growing up. This would have complicated the training of a companion pet. We did seriously consider one during the times when her seizures were frequent. They can be very expensive.
I did talk to a woman from this company about training a dog for Rose. She said that the dog must be trained with the person while having seizures. Roses seizures became so infrequent, that it would not be possible to train a dog for her. This was a mixed blessing.
Now that Rose is an adult, she may need a service dog just for protection. She goes places by herself. She is very independent. Several weeks ago, Rose had a seizure while away at college. It was at night while she walking beside a road. A dog could have at least stopped traffic.
If Rose ever needs a seizure dog, this little incident that happened in the store years ago convinced me that there are dogs who can sense more than her mama can. I am sure that Mr. Biggles has been a blessing to his owner.

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.