Surviving in the Hospital

I have done some long stints as caregiver in hospitals. It is not easy for me to sit in the same room for very long. It is almost torture if there is no window. I have learned some tricks to help me maintain my sanity as I stay with a beloved patient.

Plan ahead for your stay, not just the patient’s. Pack their supplies of underwear, house shoes, medications (or at least a list) and a decent toothbrush. Games, puzzle books and uplifting reading materials will be needed. Coloring is a soothing activity under stress. Drawing and doodling are good, too.

Your bag needs PAPER and PEN. You will be writing EVERYTHING down. Then pack healthy snacks, several bottles of water-based drinks. These can be diluted with water to stretch your supply. Vending machines take cards now, so coins will not be needed.

You may want your own small blanket and pillow.(I have never met a hospital pillow I liked.) Sleeping in the hospital is challenging. The small blanket is to cover your head for dozing and crying. I am shameless about this. If the blanket is over my head…LEAVE ME ALONE.

For extended stays you may want to break out the rolling luggage. Carrying dirty clothes out and clean clothes in gets old fast, so give your back a break.

I always carry wipes for my face and hand sanitizer for my hands. I hate feeling dirty. I recommend stripping down at the door of your home as you return. No point in importing germs.

Some hospitals have good food, but many do not. Limit your intake of junk food by packing healthy snacks. Limit sugar and caffeine. No point in being jacked up with no where to go.

Walk as much as possible. I paced the hall back and forth in front of the door. Find windows to look out of. Do not stay trapped in the room. I did have a meltdown from camping out in Rose’s room for too long. It felt like the world had disappeared and we were alone and isolated.

Be careful what you watch on the television. Do not get sucked in to daytime drama. Limit movie marathons. Too much screen time messes with your mind. Play catch with a roll of toilet paper if you must, but do something active and tactile, not just visual and auditory. If the patient requires a high volume to hear, get ear plugs.

I could go on and on here. There is no way to make a hospital stay fun. Just do your best to maintain your health and sanity. Get a family member to tag team with you, even if just to go home to shower and scream.

Mama Flow in the Know

Life in the Rose Lane

I was forced out into the world yesterday. Rose is home on spring break.

Before I even left the house, my wallet was emptied for a cut and color.

Rose came home looking like a million bucks for my money. (I have not had a hair cut in two years.)

Our first stop was supposed to be at an ATM to replenish my wallet. I discovered my bank of forty years had closed yet another branch, so I had to Google where to find my money.

Next, I sat in the car for over an hour during her doctor’s appointment. I scrounged for reading material in the pockets behind the seats. This is not my first stay-in-the-car “Rose Rodeo.” I have stashes of supplies.

To my dismay, I discovered a steno pad that was used to document the days that fate started killing my in-laws this very week last year. I wondered why it was in MY car? Then why it took me a year to find it?( In my defense, I have steno pads everywhere, because I write all the time. )

I read through these records in horror and counted the misspelled words.

I then studied an atlas and memorized all the countries bordering poor little Ukraine.( Poland, Slovakia, Hungary, Romania, Moldova, Belarus and, of course, Russia.

After finally finding my money in a lovely new BofA in the rich section of town, we stumbled upon a sweet little Mexican restaurant. Something beeped in the bathroom, but my bladder was too full to care if it was a camera.

I was stopped in my tracks by a portrait of a familiar face on the wall over the bar. This is when it finally occurred to me that the universe was talking and I wasn’t listening. ( Frida Kahlo. I remembered many details, but not her name.)

Rose and I had a delicious lunch. I ate only half of mine, so I could save the other half for my husband’s supper. (I had a sense I would not be cooking later.)

Something kept clanging around in the back of my car as we drove. I am distracted by noises, so we investigated at our next stop. It was the metal grave markers of my in-laws that we removed when we went to look at the new headstone over the weekend.

We then ventured to our favorite strip mall. I went in my first store, but my hip quit working. I made a slow semi-circle around the front of the store, looking longingly at the lovely bottles in the back left corner. I knew I could not walk back there. If I did, I couldn’t carry my cargo to the counter. I hobbled back to my car empty handed.

I pulled out the atlas again to study Africa. I put my finger on Rwanda in memory of Dr. Paul Farmer, my hero who died recently.

After almost an hour, I saw a stranger walking towards my car wearing Rose’s clothes. It was Rose but the new hair and extra pounds threw me off.

I continued to camp in my car. I texted weather reports to Rose periodically. I finally became concerned and called her phone twice…no answer.

I was trying not to panic by this point. She had just had a procedure done. But I had parked between two exits, so I knew if I entered through one, there was a 100% chance she would exit through the other. It was pouring rain by this time. (No need to get wet due to worry.)

After an hour and a half of people watching, I got an “I’m coming.” I texted which exit Rose should use and pulled her chariot to the wet curb.

I do not remember the drive home, only the relief of getting my hip and bladder into the house. Bathroom, bed, blanket over head.

What was the universe saying to me? I need to lose weight? I need to drink less? I am haunted? We are moving to Mexico? I am too old to be Rose’s mother?

I have no idea. But I am staying home on this quiet, rainy day. I will try to figure it out while Rose sleeps in.


Mary and Her Damn Lamb

( Re-posted Chapter 30 from Seizure Mama and Rose by Flower Roberts )

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 Damn Lamb.” Across the hall was a patient who was supposed to be confined to his bed, 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 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 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.

Stories to explain why I am CRAZY.

A Holiday in the Hospital

Re-posted Chapter 29: 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 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.

EMU Clues

(Then and Now for Chapter 28: The Epilepsy Monitoring Unit)

Going to an Epilepsy Monitoring Unit will get more clues about what is happening in a seizing brain. We probably should have gone sooner, but the chaos with her first neurologist kept us undecided. I think we needed to feel confident about the doctor in charge before moving to this step. What we feared in the beginning was a source of hope at this stage in Rose’s struggles.

We had basically exhausted most drug options by this point. It was time to be surrounded by a trained team of professionals. We were hoping to find the source of seizures during Phase I of EMU. There were other ways to find out what was happening besides just the electrode leads glued to her skull. Rose also had many scans.

Our first experience with Phase I did not give us the information we needed, but guided us toward other tests. At least the EMU clues ruled out many possible causes which had kept me up at night, such as tumors or lesions.

Any patient who has failed many medicines needs this step. Even if you do not get definite causes, possible sources of seizures can be ruled out and better options for medications or treatments may be uncovered. You need the clues from EMU.

An EMU stay is time-consuming and expensive, but so are trips to the ER with broken bones. Your insurance should be encouraged to cover this as a preventative measure.You may need to be a pushy mama bear.

Mama Flower

Just Do EMU!

(Re-posted Chapter 28: The Epilepsy Monitoring Unit)

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.

There is a book for young folks to help prep for their EMU visit, All Eyes On Me, by L. Brandon Magoni. The book describes what occurs in an EMU and has photos of Brandon while he was in Boston Children’s Hospital. This book may waylay some fears.

Gratitude that Lasts

(Then & Now on Afternoon Lessons:Chapter 27)

I run into one of our rescuers once in a while. We hug. I usually cry, sometimes they do also. When you receive a gift while you are desperate, the gratitude lasts.

Many more people remember us than we remember. After all we were in the midst of an emergency while they were concerned witnesses. I am know as Rose’s mother by many. They always want to know how she is and what she is doing now.

All seem relieved and pleased that her seizures have become much less frequent. She worried many folks back then. We never tried to hide her epilepsy because it would have meant hiding Rose away. She would not have consented to that.

I am glad that I did not gift her my fear. She has enough to struggle with without adding fictitious concerns. She has big plans for her future that do not include cowering in a corner.

I would like to share some of the most remembered helpers. First is Mr. F from ‘Afternoon Lessons’ who had great influence on both my children. Ms. Mingo who talked me down off the ceiling numerous times at the elementary school and made both my kids feel secure there. Principal S who carefully placed Rose in the right classes. Mrs. Coffey and her daughter who continue to love our Rose. My fellow teachers in middle school who took care of us both. That was the hardest seven years of my life to that point. My church friends who came to visit and bring food. Gina P who sat on the floor with us after the ‘Be Brave’ incident. The movie theater boys who helped us get unconscious Rose to our van. Ms. Gaither and Ms. Bock who watched over Rose in high school. I will end with her fabulous neurologist Dr. Sam who has performed miracles time and again.

I want you to see this varied list Other Mothers and Lisa. I could have gone on and on with names and events. I did not and could not have survived our life alone. Do not try to fly solo.

Get your ‘Care Team’ assembled. Put me on it. Ask for what you need. Then your heart will turn from fearful and hopeless to grateful and hopeful.

STOP trying to tackle this alone.

We are here.

Mama Flow

Afternoon Lessons

(Reposted Chapter 27 of Seizure Mama and Rose)

Rose stayed home from school during the first semester of the fourth grade, since she was having several seizures per week. They were not like clockwork, so we stayed poised and ready at all times. No one ever really relaxed. Every loud sound sent us running toward it. I helped her wash her hair before letting her have a few minutes of privacy behind the shower curtain. I sat on the toilet while she washed. When the curtain opened, I wrapped her in a towel and quickly dried her hair. We avoided both hot and cold extremes, since we thought her seizures might be triggered by temperature fluctuations. The bathroom floor, which was ceramic tile, was covered by numerous rubber-backed rugs in case of a fall.
At this point we rarely left her side. She seized everywhere doing anything. When we went places we held on to her. She got in the habit of walking everywhere arm-in-arm with another person. We carefully picked where she sat. Was the chair stable and sturdy? If she fell, what would she hit? I am sure other parents were puzzled by our behavior. Observers could not see anything wrong with our lovely Rose. We must have seemed like over-protective, hover-smother parents. We got looks and sometimes inquisitive comments. These meant nothing to us. We knew we had to protect Rose from gravity. A hard fall meant a hurt face, or shoulder, or arm. She could be thrown down with great force at any second. There was no place to go where there was no gravity, so we were there to stop the falls. If the seizure/terrorist did not show up today, and we had not seen it yesterday, then it was coming tomorrow.
So we spent most of our time that year alone in our seizure-ready home full of rugs and pillows. Few folks came to visit. We did not want much company. We disappeared off everyone’s radar. It was just us, Rose, and the epilepsy, trying to get through each day safely.
The elementary school sent Rose a teacher. He would arrive in the afternoons. Our library room would be straightened and dusted, readied for his visits. The table in the center of the room was cleared and polished. The ceiling fan would be turned on low. A snack would be prepared for presentation to Rose’s guest. I would meet Mr. F at the door with a smile. Rose would be dressed and ready for her lessons.
These afternoon lessons were a blessing to me and Rose’s brother, as well as to Rose. The teacher acted as our back-up Rose-monitor. I could retreat to the kitchen to fix supper, within ear-shot. I could not discern what Rose and her teacher were saying, but I could hear the steady rhythm of her teacher’s voice, punctuated by Rose’s laughter. She loved Mr. F’s visits. Sometimes he was the only non-family member she saw during the week.
My son enjoyed these afternoons as well. He got on his bike with a walkie-talkie attached and rode through the woods surrounding our house. He knew he could be called back home if needed. Mr.F was there, so he could relax. These afternoons were a respite for him. He loved riding his bike and he felt peace in the forest. All was well during the afternoon lessons.

Seizure Mama speaks to parents:

You cannot do this alone. Being on edge every minute will poison you. It will poison your whole family. Get some support. All of you need some relaxation and rest. You are playing a long game here. Do not put your life off until this is over. This is your life now. Things may change for better or worse, but now is what it is. You all have to survive and thrive together.
These afternoon lessons let my son be a little boy for a few hours. Being a big brother is a huge responsibility when the little sister has seizures. At these times he could be free to ride fast and dream big. He would later become a mountain bike racer. He and his dad enjoyed this sport together. Those seeds of passion were planted on those afternoons when he could just be himself. I will always appreciate Mr. F for the gift he gave to both my children.

Real Hope

When one is truly desperate there is a tendency to grab for any limb within reach. This is understandable, but pause and breathe first. Examine the limb before latching on.

False hope can have long-lasting, negative effects on everyone involved. False hope is a fast fix. One gets a surge of hope followed by remorse and shame…or worse. You need a real fix that lasts.

Real hope requires reasoning and planning. I am one who spends way too much time in the frying pan before jumping. It’s the scientist in me. That is not a bad thing. Bouncing from drug to drug or doctor to doctor solves nothing.

Your approach must be systematic. Fully test a treatment (or doctor)before scrapping it completely. The other side of that is…know when to say when.

My advice at these moments is ” Pause and Breathe.” That sounds simplistic, but in that small, quiet space of time your thoughts can collect themselves and stop scrambling around for a solution.

Our second neurologist was correct in saying we had sampled the drug smorgasbord without truly testing the drugs’ effects. Each variant must be tested alone. We had been mixing our cocktails with no recipe. We had been shaken and stirred!

When something is not working. Pause and breathe. Then analyze what the root cause really is an go from there.

That’s how you get to some real hope.

Mama Flow

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