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See You Now: A Memoir of Shane's Triumph Over SMA
See You Now: A Memoir of Shane's Triumph Over SMA
See You Now: A Memoir of Shane's Triumph Over SMA
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See You Now: A Memoir of Shane's Triumph Over SMA

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“Author Lisa Oltmans writes with conviction and certainly knows a lot about spinal muscular atrophy (SMA) – a veritable death sentence for her son Shane, who defied the odds and lived until young adulthood. She also exhibits enough faith for a small army. Of her son’s passing, she writes, ‘I lived for 22 years 1 month and 2 days with a person full of light’ one of many examples of her a glass half full approach to a devastating situation.
Yet she neither sugarcoats her circumstances nor condescends to the reader. Instead she offers a step-by-step line of attack against and practical suggestions for dealing with a disease that weakens all the voluntary muscle systems by robbing the body of its ability to eat, breathe and move. This book will be especially useful for people dealing with a loved one with any debilitating disease. And those who prefer to avoid the subject entirely might do well to read it as well, if only to appreciate what they do have and take a note from this author’s approach to life’s challenges.”
By Judge, 3rd Annual Writer’s Digest Self-Published eBook Awards

LanguageEnglish
PublisherLisa Oltmans
Release dateMay 15, 2015
ISBN9781310725203
See You Now: A Memoir of Shane's Triumph Over SMA
Author

Lisa Oltmans

Lisa was born in NYC and grew up and attended school in East Texas. Shifting from a career in information technology to freelance writer, she is working on several writing projects. Her first published book, "See You Now: A Memoir of Shane’s Triumph over SMA", details her life raising her only son with debilitating spinal muscular atrophy. Lisa and her husband travel the country with two rescued dogs, a Papillion named Vinny and a Pomeranian named Grizz. They do volunteer work mentoring families impacted by spinal muscular atrophy. Watch for Lisa’s books coming soon: Heart Upon the Highway: Two Broken Hearts, A Giant RV, and a Dog and a Half Enduring Love: Devotionals for Caregivers An O C D Mom’s Guide to Care-giving and Housekeeping

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    Book preview

    See You Now - Lisa Oltmans

    See You Now: A Memoir of Shane’s Triumph over SMA

    Copyright 2015 by Lisa Oltmans

    Published by Lisa Oltmans at Smashwords

    Smashwords Edition License Notes

    This ebook is licensed for your personal use only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for you only, then please return to Smashwords.com or your favorite retailer and purchase your own copy. Thank you for respecting the hard work of this author.

    Preface

    Chapter 1 - The Beginning

    Chapter 2 - The City of Faith

    Chapter 3 - Star Trach Club

    Chapter 4 - Singing the Blues

    Chapter 5 - Praying for Wisdom

    Chapter 6 - The Napkin Plan

    Chapter 7 - Think Digestion

    Chapter 8 - Septic Line

    Chapter 9 - The Shift

    Chapter 10 - Bloody Flux

    Chapter 11 - The Proposal

    Chapter 12 - Independence

    Chapter 13 - Family Reunion

    Chapter 14 - Millennium

    Chapter 15 - Banana Chick

    Chapter 16 - Spiritual Things

    Chapter 17 - Koi Keeping

    Chapter 18 - Secret Car Rides

    Chapter 19 - The Mural

    Chapter 20 - The Mayor of the Mall

    Chapter 21 - Praying for Favor

    Chapter 22 - Shane Triumphant

    Chapter 23 - Adulthood

    Chapter 24 - Skullduggery

    Chapter 25 - The Power of Zen

    Chapter 26 - Signs

    Chapter 27 - The Ripple Effect

    About the Author

    Other books by Lisa Oltmans

    Preface

    This book is a memoir of my son, Shane’s, life with crippling Spinal Muscular Atrophy Type I (SMA) also known as Werdnig Hoffman from my perspective as his mother. When he was a baby, doctors told my husband and me that he would not survive the weekend, then the week, then the month, then the age of two. They finally quit predicting, and he made it to adulthood. He graduated high school with honors. He had courage, integrity, and selflessness with a Zen approach to life. He was born November 10, 1988, g-tube placed in February of 1989, intubated in May of 1989, and trached with ventilator to go in July of 1989. He outlasted six ventilators! He taught me to live in the moment, and never to be a victim of my circumstances. He made me laugh every day with his witty sense of humor. I was blessed to care for him and see him overcome so many medical challenges to live a good life.

    This book relates many medical problems and the solutions that we found for our son. Please do not rely on the information in this memoir as an alternative for medical advice from your doctor. Our story should inspire you to seek your own solutions under the protection of your doctor’s care. Everyone is unique, and what worked for our son may not work for everyone with SMA.

    To write this book, I relied upon my memory, journals, communication books, medical reports, and notes from nurses, doctors, and therapists. I have changed the name of most but not all of the individuals in this memoir, and in some cases I have modified identifying details in order to preserve the anonymity of some of the people in our lives. I also omitted some people and events, but only when that omission had no impact on the substance of my memoir.

    To all the nurses, doctors, therapists, home health agencies, friends, and teachers who assisted us every day with raising Shane, you have my sincere thanks and appreciation. Without these dedicated people, this story would have ended at Chapter 1. Also special thanks to the nurses who were with us for extended periods of time. You are all members of our family whether you want to be or not. Shirley Beard and Renee Watts, you exemplify what it is to be a dedicated nurse. You are dedicated catalysts for the healing power of God.

    To my editor, Kathy Gollmitzer, thank you for being my reader and for editing this work for me. True friends are hard to find, and a true friend with editing abilities is priceless. Working with you takes me back to journalism class at Carthage High School when I had the features and sports page and you were the Editor of the Carthaginian.

    To all the babies, children, and adults who are fighting SMA, my heart is with you all, and I pray for a cure to come soon. I can only hope and pray for you that you’re able to live as fully as you can. Face down your fears, and get out there into the world. Parents, do not let the fear, grief, and guilt of this disorder destroy you.

    To those who have lost loved ones with SMA, I share your unspeakable pain.

    A portion of the proceeds from this book will be donated back to the SMA community of infants, children, and adults impacted by SMA.

    I dedicate this book to my husband, Michael. Without his bulldog tenacity and strength of character, Shane would not have lived to become the spiritually strong man that we raised him to be.

    Chapter 1 - The Beginning

    And he said, while the child was yet alive, I fasted and wept: for I said, who can tell whether GOD will be gracious to me, that the child may live? 2 Samuel 12:22

    There is a safe at my house. It doesn’t contain jewelry, gold, silver, or any money. It doesn’t contain stocks, bonds, or annuities. It contains all the photographs and albums that prove the existence of my son. It contains the artwork that he created with his own hands always guided by others. Be assured that he directed the subject, colors, and attitude of the art. My favorite is Harry, the happy caterpillar in blue finger paint. There are precious and tragic memories that I need to share.

    If the most catastrophic disorder happened to you, how would you live in spite of it? How would you go on? A tiny baby named Michael Shane taught me how to go on and how to embrace life even in dire circumstances. I am blessed to be able to share his secrets with all of you. With these pages, I will add to my treasure safe, and you will learn, as I did, that it is possible to go on when the worst happens.

    On November 10th, 1988, I gave birth to my only child, a son; we named him Michael Shane. He was a healthy baby born at North Little Rock Hospital by C-section. He had all the normal reflexes and normal baby actions at birth; however, by the time of his six weeks doctor check-up, his reflexes were weak, and we were referred to a specialist for further testing.

    The specialist was only able to tell us not to worry. Let me do the worrying for you. She scheduled a battery of tests for the next day. Shane had a brain scan; Mike and I put our baby on a sliding table. They secured him down with straps and advanced the table into a circular scanning machine. He passed this test, and neuro-blastoma (brain tumor) was ruled out. Then we had to do a blood draw at the local hospital laboratory. Our infant was taken from us to cry in a room out of our sight for over an hour. A red-faced lab technician returned Shane to us with multiple skin pricks covered by bandages.

    Needless to say, my husband and I were as exhausted as Shane at the end of the day. Thankfully we took the time to fill up our car with gas on the way to our home which was 24 miles out of town. Four miles of this was dirt road with a narrow concrete bridge with no guard-rails.

    That night while my husband, Michael, was giving the baby his bottle, Shane started to gurgle as if he were drowning. He became pale and was having difficulty breathing. A quick phone call was made to the pediatrician. He condescendingly said, This sounds like croup. Just run your shower and let your baby breathe in the steam in the bathroom.

    Michael became distraught, Get your butt in the car. We’re going to the hospital. I grabbed the baby along with my shoes in my arms, and jumped in the car. As we sped down the dirt road and barely crossed the narrow concrete bridge, I held Shane in my lap not knowing what to do for him as he struggled to breathe. Michael hit the highway and had our new Honda’s speedometer pegged as we knew we were racing to save our son.

    We were still 15 miles from the hospital when Shane quit breathing and became ghastly pale in the moonlight. Michael cried out, OH, NO! NO! I shrieked, GOD HELP US! at the top of my lungs. Michael also screamed, GOD DO SOMETHING! I really believe that God personally responded to our call because a glowing, visible light shone in our car, and peace descended upon Michael and me. I cradled our little baby and began doing CPR. I had never been instructed, but somehow in that sudden peaceful moment I knew what to do. Shane threw up and began to breathe again.

    He was breathing very shallowly as we pulled up to the emergency room of the hospital where he was born in North Little Rock. We watched as the ER staff evaluated our baby, and they asked us a battery of questions probably to rule out child abuse. The good news was that Shane was breathing, and his PH was normal which meant that lack of oxygen did not cause brain damage. We were very thankful for that.

    A nurse named Bonnie that we knew from Shane’s birth was on duty. She had ICU experience and nursed our baby all night while we went home to regroup. Michael and I were distraught and inconsolable, but we knew we had to sleep to get ready for the next day. When we returned to the hospital at 7’oclock in the morning, Shane had improved during the night. Bonnie and the respiratory therapist showed us how to use a percussor the size of a kitchen spoon to tap, tap, tap his chest. This moves secretions from the lung and allows them to be suctioned to clear the lung. The small North Little Rock Hospital arranged a helicopter transfer to move Shane to Children’s Medical Center across town in Little Rock.

    Children’s Hospital in Little Rock is the most prestigious pediatric hospital in Arkansas, and it is staffed with very highly trained doctors and excellent nurses. We knew Shane was in good hands, but we needed to stay with him no matter what. I had my experience with turning our son over to people at the laboratory testing site the day before. No one would separate us for hospital procedures again.

    Shane was immediately admitted to the Pediatric Intensive Care Unit (PICU) after the airlift. The doctors there evaluated him and diagnosed him with aspiration pneumonia. Shane had breathed in his formula instead of swallowing it. The odd twist for him was that his arms and legs had become completely floppy. He had unusual tongue movements. His legs were arranged in a frog-like position when he lay on his back.

    That night, his condition worsened and he had to be intubated and placed on a life support ventilator to keep him breathing. Intubation involves putting a breathing tube through the mouth and down into the throat to open up the main bronchus of the lung. This allows a ventilator to either replace or supplement breathing for a patient who is unable to breathe adequately. I will always remember the tears streaming down the face of the tall red-headed male nurse tech that intubated him that night. Shane, our perfect baby, had a serious medical condition.

    The doctors scheduled a muscle biopsy surgery for Shane on the third day of his hospital stay. A small quarter inch long section of his thigh muscle was removed and sent to a laboratory for evaluation. A few days later in a dramatic fashion a rocking chair and a box of tissues were produced by the PICU doctors. The news was given to us point blank like a gunshot; the diagnosis is Spinal Muscular Atrophy - Werdnig Hoffman Syndrome. We were shown a medical book with a very brief notation about the syndrome. It had no established treatment, and babies with it die in infancy before the age of two. Death is caused by respiratory failure, as the inter-costal chest muscles that power breathing become too weak to support life. The doctors encouraged us to give up and accept that our son would die soon.

    After the doctors left us to cry, a kind-hearted nurse approached us. In a low voice, she gave us the name and phone number of a family in Springdale, Arkansas, with a little girl who had a mild form of SMA. We immediately called them and found that their little girl was five years old. Her father credited her survival to treatment by a physician in Tulsa along with aggressive physical therapy, including using a swimming pool with her every day. Her father insisted that we call a family in Tulsa, Oklahoma, because their son had SMA with respiratory problems just like our Shane.

    We called Steffie, and she knew exactly what we were going through because her family had gone through the same scenario with their son, Aaron, who was now seven years old. Aaron was diagnosed at a well-known pediatric hospital in Chicago, and he was released to palliative care. Only her husband and she could see that Aaron was fighting to live, so they moved him to the City of Faith Hospital in Tulsa. The City of Faith was founded by an evangelist to take hopeless cases. Aaron was nursed back to health, given a plasma transplant, and weaned off the ventilator during the day. He had coded nine times, and the hospital saved his life each time. Steffie insisted that we call Aaron’s current physician, Dr. Bodiman, as soon as possible.

    Aaron’s doctor phoned us back at Arkansas Children’s Hospital the next day which was a Saturday. He communicated directly with the Arkansas doctors and gave them instructions on what to do for Shane. These subtle changes: elevate the head of the bed so it is at a 30 degree angle; continue tube feeding but go into the small intestine instead of the stomach to avoid gastro-esophageal reflux and aspiration; do aggressive physical therapy; and bring in adaptive seating devices to enable the baby to sit up without pressure on the diaphragm. These changes made a large impact on Shane’s condition. Aaron’s doctor also recommended a g-tube surgery which would place a tube directly into Shane’s stomach replacing the nasal feeding tube down Shane’s nose. He advised us that with good respiratory care, physical therapy, nutrition, and prayer, we could get Shane home and help him thrive.

    My husband and I asked ourselves, Would God have enabled us to save Shane to have him die in a PICU in pain and terror? Our instincts said no. If Shane had not been destined to survive, the good Lord would have taken him in the car on the way to the hospital. Our other consideration was Shane himself. He was a critically ill infant, yet he was conscious and knew Michael and me. He would not loosen his grip on our fingers, and if we tried to sneak away, he would awaken in terror. When we were at his bedside with one of our fingers in his hand, he was peaceful and as content as one can be with an intubation tube down one’s throat.

    Luckily, a dear friend showed up out of the blue to take our place at Shane’s bedside. This allowed us to be alone, and we went through the deep shock and grief that hits when your child has a crippling, sudden onset illness. Michael and I held each other and sobbed uncontrollably in despair for at least an hour. Afterward, we began analyzing the facts and evaluating our options. The option of giving up was quickly discarded. We experienced denial. They could be wrong, but we knew that the staff at the hospital was the best in the region. We had to accept that they were not wrong. We concluded that we would fight as hard as Shane was fighting to get through this time. We would evaluate each medical decision as we came to it, and Shane’s best interest would come first. In the space of a few hours, Michael and I had experienced the complete gambit of emotions and stages of grief, and we had accepted Shane’s diagnosis. Now we had to navigate our course to finding a way to help him live.

    Back at the hospital, the doctors were attempting to prepare us to allow Shane to suffocate to

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