What It’s Like to Be Luke’s Mom
The following article was originally written as the text to accompany a slide show presentation that Amy has used at Children’s Hospital in Cinncinati, OH. It is deeply moving, and embodies many of the concepts discussed in Lorie Judson’s research (see cover story).
When my oldest son Luke was 5 months old, I shuddered the moment I realized that I would have to take a needle to his finger to get a splinter out at some point in his life. Little did I know that in 8 years I would be putting a 1 inch needle into his chest at least twice a week to give him life!
My name is Amy Vohsing. I am the proud mother of three beautiful children. Luke is 15, Max is 13, and Ellen is 10. I am also the wife of a wonderful man. Bill is a caring husband and an incredible father.
In 1995, when Luke was in the first grade, the kids and I were in a terrible car accident. Luke lost his spleen as a result of the crash. For 2 years Luke had many periods of severe abdominal pain which resulted in many hospital stays and an exploratory surgery. For those 2 years we lived with the uncertainty of what caused the episodes of severe pain. Now we live with the uncertainty of what major hurdles are in front of us due to the loss of his small bowel in 1997. On Easter morning of Luke’s third grade year, he lost all but 10 inches of his small intestine.
In the Beginning
When the surgeon told me Luke had lost 95% of his small bowel, my mind stared into a corner imagining myself curled in a fetal position on the floor. I could hear him talking, but it sounded as if he was talking at the end of a long tunnel. He was patient with me and my husband, as I asked him to repeat, despite the chaos going on in my mind. I kept trying to understand how Luke could live without such an important organ. The surgeon said that he would repeat as many times as I needed. This was helpful since we were having trouble absorbing the unbelievable hurt.
I can’t begin to explain the excruciating pain which was felt watching your child’s almost lifeless body being transferred to a bed in PICU. I collapsed crying on the floor. The respirator, machines, lines, and the staff is more than overwhelming. I remember looking at his name on the monitors in disbelief that all this was for “my” Luke.
As quickly as I had collapsed onto the floor, my mind shut down and I went into denial. I was just happy he was alive. We had no idea of what the future held for us. I immediately became the strong-what do I need to do mom. I couldn’t handle the emotional pain so I pushed it down into the recesses of my mind. I am still letting it out little by little.
The first glimpse into reality was too painful so I went into a caregiver mode. But the second glimpse into our new reality came when a nurse visited our room on her way home to extend her sincere sympathies. She also had visited us in the PICU. She talked about how nurses, doctors and staff don’t (or can’t) get too involved because they know the dramatic change trauma can bring into your life. She spoke of insurance costs, job losses because of high insurance costs, sibling adjustments, stresses on marriage, etc. I was confused and thought she was referring to someone else. When she left the room I remember thinking “why is she telling me this? Luke will be ok.” It was days later that I let it sink in little by little — always little by little.
Pain and terror appeared when Luke was discharged after three weeks in the hospital. We all were very excited, but I was in an absolute panic. I kept trying to picture myself putting a needle into his chest and giving IV’s at home, realizing that my role as a mother was changing to include being a nurse.
I prolonged leaving the protected cocoon of Children’s by claiming I didn’t want to leave without pectin to put into his formula. After three hours, a nurse finally had to call the nutritionist to come back and reassure me that I could, in fact, find pectin in any grocery store. With the car filled with equipment, and much more to come from homecare, we left the hospital.
When we first came home he was on an extremely low fat, low sugar, no milk products, no sorbitol, and low fiber diet. He was to eat a lot of high complex carbohydrates, salt, water, and protein. What does this mean to a nine year old? It means major adjustments, not only on a daily basis, but on holidays, at amusement parks, parties, and family get-togethers. You quickly realize how many gatherings revolve around food and have to make adjustments.
Today our daily routine includes: mixing formula, timing Luke’s night feeds, giving an IV feed twice a week, making sure he has enough medical supplies, timing outside activities to fit in his feedings, making sure he has a full belly to ward off nausea, always carrying my cell phone for emergencies, anticipating nausea and trips to the emergency room, and knowing where the nearest bathroom is.
Currently Luke has no spleen, gall bladder and appendix, and very little small bowel. Luke is on nightly g-tube feedings and TPN twice a week. He is fighting kidney stone formation, and his bone density is very low. (We joke with Luke about having his own pharmacy in the bathroom.) Luke also has chronic diarrhea. Once Luke couldn’t hold his bowels and had to let go in the car near school. Thankfully I had anticipated this possibility and had a change of clothes in the school office. His humiliation was gut wrenching. Once again, letting it out, little by little.
Halloween, Christmas, and Easter traditions have changed to include no sugar/low fat food. His Easter basket turned into a basket of gum and gifts. Eating out became a thing of the past. Fast food, pizza, ice cream and candy are all a memory for Luke. He once said it wasn’t too bad once you forgot how it tasted.
We encourage Luke to take control of his situation as much as possible. In the spring of 2001, he completed a science fair project which took him to state competition. He had invented a device to prevent his g-tube from kinking (and occluding) so much at night. Luke and I have been sleep-deprived from the beginning of this adventure. His g-tube kinks cause the alarm to go off most nights at least once, if not many more, depending on how tired he is. When Luke is sleepier, he tends to roll onto the line more. His invention has helped. He has a patent pending and is excited about helping others.
Luke is an unbelievable child. Even before the accident he was a kind, empathetic, compassionate, and truly good person. He has handled this change in his life unbelievably well. I worry that he doesn’t vent more. He has only cried twice since this happened, and that only lasted about 10 minutes. He takes what life deals him with a grace I am envious of. Luke has many daily obstacles. When he lost his bowel, Luke got in front of his entire class and explained what happened to him. He also took questions and answers. These classmates have been very supportive of him — even now in high school.
During his early school years he had to use the teacher’s bathroom because the noise created by the gas is very embarrassing. Now he holds it unbelievably long. Twice a year we have to do a 48-hour urine test — preferably during the week, which means collecting at school! Just last week I heard an “ABSOLUTELY NOT” from him.
Luke is unable to play contact sports. He loved basketball until it became too aggressive for him to play safely. He had also been on the swim team for many years, but had to drop out because of his low stamina and loss of calories. Thankfully he has found another sport he enjoys, golf, and is on the team now.
Luke swam a few years without a shirt on, exposing his scars and g-tube until he was tired of answering all the questions. Now he never swims without his shirt. At water parks he must get permission to wear his shirt or live with the stares when he takes it off.
HPEN: a Blessing and a Curse
The fact that no one can tell from outward appearances that he has a serious medical condition is both a blessing and a curse. It is a blessing that he can appear normal most of the time. It is a curse because few people know or remember he has a serious medical condition. If they remember they say, “He’s well now right?” I don’t think people comprehend that Luke will never be physically normal again. Even though he looks so well, for which we are very grateful, they don’t know what happens in order to keep him that way.
Bill and I feel very alone. We can only vent with each other. Relationships with family and friends has changed. We have lost a number of close friends since Luke lost his bowel. I have recently read that this sometimes happens when a traumatic change occurs in your life. Just when you need a friend the most, they can’t handle seeing you this way and turn away. We unfortunately had to create and nurture new relationships just when you don’t have the energy or the time. The pain gets pushed down deeper.
Different ages bring different challenges. Luke is eager for the independence of his age. A major milestone occurred when he went to Ohio Wesleyan for an academic camp. He had to take care of himself and his pump for a week. I was more than afraid — I was petrified! Luke has a wonderful gastroenterologist. Her approach to treating Luke is to have him live his life first, and then fit in his medical problem. In order to ease my fear, she left her pager on 24 hours-a-day for the week he was gone. The comfort that this brought all of us was immeasurable.
Luke’s younger brother and sister have had to change parts of their lives because of his condition. I am so proud of how accepting and tolerant they are of the new traditions we’ve made and how they show their unconditional love for him.
Max is only one year younger than Luke and his best friend. They are very close. When asked early on, Max missed lying on Luke’s back more than anything. This was one of their favorite ways to watch TV. Now he misses wrestling with Luke. It pains Max to see Luke get a needle in his chest and be so limited when he is hooked up to his feeding lines. One night, three years ago, Luke went to Children’s because of a line infection. When Luke returned home, Max moved his feather bed into Luke’s room and placed it next to Luke’s bed. He was there for two years and now is still there from time to time.
Ellen is four years younger than Luke. She loves and admires Luke very much. She also holds a lot in. Ellen needed to see a psychologist because of her fears stemming from Luke’s condition. She feared something would happen to Bill and I, and would not part from us. Fortunately Ellen has crossed this hurdle.
Things have changed for me, as well. I had always enjoyed ‘quiet times’ until this happened. Now every moment at home or in the car I listen to Books on Tape or read. I fear the quiet because the pain returns. The tension builds and I have to force myself to have a good cry a few times a year.
People have told me that I appear so strong. Little do they know that I am jello inside and am constantly on the verge of tears. The stress of life threatening infections is always number one. I worry about him at the dentist, near friends who may not be well, during flu season, and the list goes on and on. It is hard to be just a mom and not a doctor, nurse, psychologist, and researcher.
Advice for Clinicians
In my journey as a mother of a child on HPEN I have gathered some wisdom worth sharing with the clinicians who take care of Luke and others like him. We want you to know that:
• at times, we could be tired mentally and physically.
• we crave tangible empathy for our children
• we want to understand everything you say and may ask you to explain it a number of different ways.
• there is a bigger picture than what you see in the hospital. There are siblings to deal with, a marriage to keep alive, and the mental stress of watching your child handle his situation daily.
• we need you to listen to what we have observed about the situation. We have become our child’s homecare nurse and know them best.
• our children like it when you talk to them. It makes them feel like they are the most important person around.
• we understand the stresses you are under, but will take faked compassion over no compassion.
• it may take a lot of work, both mentally and physically, to move an inch in our children’s care, and that it is frightening, at times, to see the enormous mile ahead.
I would like to conclude with an analogy between the homePEN clinician and a Gibran poem from The Prophet: Gibran talks about not being able to follow your children or even understand them because they belong to the future that you can never visit, not even in your dreams. Then he compares parents to a bow and children to the arrows. He says to the parents, “Let your bending in the archer’s hand be for joy, for as God loves the arrow that flies, so too God loves the bow that is stable.” You clinicians are the ones who help families to keep their bow stable so that our children may fly to whatever the future holds for them. Thank you.