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Extended Family

Extended Family Each night my husband Sherin and I listen to the hum of the air compressor, to the beeps from the pulse oximeter, and for weak calls for help from our 5-year-old son Ben while we try to get enough rest to attend to him, his two sisters, and our occupations the next day. The monitor we have installed in Ben's bedroom scarcely picks up his voice over the sounds of the three machines operating in his room, and, therefore, we half-sleep, afraid of not hearing him. Ben may need suctioning, repositioning, or soothing. About once a week a night nurse sits with Ben, and only then do we close our bedroom door. At 6:30 AM, I know it will be a good day if the drink I have given Ben starts his bowels moving. Unable to hold himself on the toilet, Ben tolerates my supportive grip on his waist. Watching his 1-year-old sister Charlotte create havoc in the bathroom by dragging towels, toilet paper, makeup, and more out of cupboards helps distract Ben from his pain. It is at this time of the day that he laughs the most. After the bathroom tasks, I perform the necessary tracheostomy care activities—suctioning, cleaning with a mixture of hydrogen peroxide and saline solution, checking the stoma for signs of infection—now ordinary events that once seemed daunting to educated but nonmedical parents. I clean and replace the suction tubing, wash the tracheostomy mask, and empty water from the air compressor's collection bags, so that everything will be ready again when Sherin repeats this routine later. The division of labor we have created means that I take the morning caregiving shift, while Sherin is in charge at night. By 7 AM, Ben is ready for breakfast. Now it is time to wake 8-year-old Lucy, who would love to rise slowly with a backrub, but there isn't time because her brother's schedule is so tight. Ben still needs help eating his breakfast and taking his medicine. He must make another bathroom stop prior to the arrival of the school van. Coats must be put on, the oxygen tank and walker must be transferred to the porch for pickup, the suction machine bag must be packed with new filters, catheters, and gloves. I transfer Ben to his power wheelchair in the garage, while Lucy keeps Charlotte safe inside. Soon the nurse, whose presence and care allow my son to attend school, will arrive. By 7:45 AM Ben and his nurse are on their way to his public school kindergarten. I drive Lucy to her bus stop and Charlotte to child care, and then I go to work. It is a successful morning if I have not yelled at anyone. The cognitive-behavioral strategies I have learned for managing this stress help me function as a parent of a child with a rare genetic neuromuscular disorder called Schwartz-Jampel syndrome. I no longer minimize the situation, because it has only escalated over time, with my son's loss of function and the addition of the tracheostomy, but I am learning how to accept this life and how best to operate within these constraints. I am making efforts to carve out time for Lucy, Charlotte, Sherin, and me. I am also realizing that the time I spend at medical and therapeutic appointments with Ben does not qualify as quality time (although we do make the most of this time) and that he needs one-on-one, nonmedical time with his parents too. Currently, this involves cooking and math quizzes with Sherin, crafts and reading with me. Sour cream coffee cake is Ben's favorite weekend treat; his tissue paper creations fill our house with color. Yet what really makes this situation bearable is knowing that we are not alone in caring for our son. Because of the nurse, Ben can attend school, and I am able to work, something many mothers of children with special health care needs are unable to do. We could not take care of Ben if it were not for the extraordinary dedication from specialty medical personnel who have devoted their lives to helping people like my son and our family. Together we have navigated unknown medical terrain. We have gatherings where our extended family members can talk to others they do not often see, distanced by hospital and city geography—the cardiologist can speak to the neurologist; the orthopedist can communicate with the pulmonologist and the physical therapist. Like our many relatives in states and countries far away, our extended family of health care professionals is aware of Ben's current health concerns, they call to check in on us, and they provide tangible, supportive care whenever they can. When we need a medical appointment urgently, the office staff who answer the telephone fit my son into the schedule as quickly as possible. We have home and cell telephone numbers for many of Ben's specialists, who know that we will respect their privacy and not contact them unless truly necessary. We have trusted e-mail exchanges with almost all of them. Recently, during a difficult tracheostomy change that led to respiratory distress, we panicked and called 911. We then called Ben's otolaryngologist at home, who, while not on call, rushed to the hospital's emergency department and attended to our son himself. This is why Ben resides at home, living as normal a life as possible. We know that if we falter in our best efforts to care for him, there are highly skilled, experienced, and exceptionally dedicated health care professionals, our extended family, who will help us when we need it most. When the home medical equipment company failed to provide us with the necessary tracheostomy supplies required to ensure Ben's health (for example, providing only 200 single-use suction catheters a month, instead of the prescribed 450), and our calls to them went unheeded, Ben's medical team faxed letter after letter to the company until they finally fixed their recurring errors. When the insurance company denied a prescribed medicine, it was Ben's medical team that corrected the problem. When we need to know more information about treatment for Ben's rare neuromuscular condition, we call or e-mail his geneticists in a hospital many states away. Not only do we receive superb medical information and advice, but we are treated like family. They ask how Ben is doing in school and at home, and they appreciate his accomplishments. We are reminded that their doors are always wide open. Years ago, when it first became apparent that Ben required a tracheostomy, and Sherin and I disagreed over whether this was the appropriate medical intervention, it was Ben's otolaryngologist who invited us to his office, on a nonclinic day, for an open and honest discussion about Ben's health. Like a family member, he had Ben's best interests in mind, but he also knew that the wider family dynamics would affect Ben's health. Our conversation addressed these factors. This type of collaborative relationship, in which health care professionals and parents—together—make treatment decisions that will work best for the family and the child, defines our family. We had similar conversations with our son's pulmonologist, from his home telephone, regarding the broader social and health implications of Ben's need for a tracheostomy. When we expressed concerns about our ability to care for a child with a tracheostomy, Ben's health care professionals boosted our confidence in our ability to do so. Conversation about difficult topics is a hallmark of any functional family, including ours. Once, we consulted a pediatric neurosurgeon who kept referring to Ben as “the boy,” despite the fact that I informed him of Ben's name twice, and many of Ben's medical reports were lying in front of him. All of this physician's questions about Ben were directed at me and Sherin, until finally I said, “Please ask Ben yourself!” He did, and was surprised by the response. The physician said, “He's very smart,” and we said, “Yes,” but the man's behavior didn't change. He wasn't able to see beyond Ben's disability. We never saw him again. The occupational therapist who has treated Ben once a week, at home, since he was 1 year old arrives at our house—to the delight of all three children. She always brings activities for each child, although she is officially treating only one. Like a family member who arrives for a birthday party for one child, she has smaller but no less important presents for the other siblings. She understands the implications of Ben's disability on Lucy's emotional health in particular, and she does what she can to include Lucy and Charlotte in her work with Ben. The nurse cardiologist, who called me proactively to schedule a checkup prior to Ben's latest surgery, remembered to use, as Ben has requested in the past, the adhesive remover before taking off the ECG stickers on Ben's body. The echocardiogram technician, recalling that Ben loves chocolate, had a special treat waiting for him at the end of the test. The winning smiles Ben flashed them made the trek to the hospital, the babysitter arrangements, the school pickup schedule change, and the rearranging of work meetings worth all of my trouble. It will never be easy to care for a child with special health care needs. But it can be easier with reinforcement from an extended family. Parenting Ben is possible through the personal connections, good conversations, accessibility, and acknowledged respect among our extended family members. When these are missing from our relationships, we feel doomed and unable to cope. We are not another report or another appointment. We are a family who needs more supportive members to keep us going. By 7 PM Sherin has changed Ben's trach ties after giving him a bath. Now there is more cleaning with peroxide and water, more suctioning, checking of oxygen levels, filling of water bottles for the air compressor, changing of tubing, restocking of supplies, and giving of medication to Ben. Sherin asks Ben some difficult math questions, and Ben adds the large sums in his head. I read the children a story. Lucy and Charlotte say good night to their brother and the machines are turned on. After several rounds of goodnight kisses, we leave our bedroom door ajar. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMA American Medical Association

Extended Family

JAMA , Volume 297 (24) – Jun 27, 2007

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Publisher
American Medical Association
Copyright
Copyright © 2007 American Medical Association. All Rights Reserved.
ISSN
0098-7484
eISSN
1538-3598
DOI
10.1001/jama.297.24.2675
Publisher site
See Article on Publisher Site

Abstract

Each night my husband Sherin and I listen to the hum of the air compressor, to the beeps from the pulse oximeter, and for weak calls for help from our 5-year-old son Ben while we try to get enough rest to attend to him, his two sisters, and our occupations the next day. The monitor we have installed in Ben's bedroom scarcely picks up his voice over the sounds of the three machines operating in his room, and, therefore, we half-sleep, afraid of not hearing him. Ben may need suctioning, repositioning, or soothing. About once a week a night nurse sits with Ben, and only then do we close our bedroom door. At 6:30 AM, I know it will be a good day if the drink I have given Ben starts his bowels moving. Unable to hold himself on the toilet, Ben tolerates my supportive grip on his waist. Watching his 1-year-old sister Charlotte create havoc in the bathroom by dragging towels, toilet paper, makeup, and more out of cupboards helps distract Ben from his pain. It is at this time of the day that he laughs the most. After the bathroom tasks, I perform the necessary tracheostomy care activities—suctioning, cleaning with a mixture of hydrogen peroxide and saline solution, checking the stoma for signs of infection—now ordinary events that once seemed daunting to educated but nonmedical parents. I clean and replace the suction tubing, wash the tracheostomy mask, and empty water from the air compressor's collection bags, so that everything will be ready again when Sherin repeats this routine later. The division of labor we have created means that I take the morning caregiving shift, while Sherin is in charge at night. By 7 AM, Ben is ready for breakfast. Now it is time to wake 8-year-old Lucy, who would love to rise slowly with a backrub, but there isn't time because her brother's schedule is so tight. Ben still needs help eating his breakfast and taking his medicine. He must make another bathroom stop prior to the arrival of the school van. Coats must be put on, the oxygen tank and walker must be transferred to the porch for pickup, the suction machine bag must be packed with new filters, catheters, and gloves. I transfer Ben to his power wheelchair in the garage, while Lucy keeps Charlotte safe inside. Soon the nurse, whose presence and care allow my son to attend school, will arrive. By 7:45 AM Ben and his nurse are on their way to his public school kindergarten. I drive Lucy to her bus stop and Charlotte to child care, and then I go to work. It is a successful morning if I have not yelled at anyone. The cognitive-behavioral strategies I have learned for managing this stress help me function as a parent of a child with a rare genetic neuromuscular disorder called Schwartz-Jampel syndrome. I no longer minimize the situation, because it has only escalated over time, with my son's loss of function and the addition of the tracheostomy, but I am learning how to accept this life and how best to operate within these constraints. I am making efforts to carve out time for Lucy, Charlotte, Sherin, and me. I am also realizing that the time I spend at medical and therapeutic appointments with Ben does not qualify as quality time (although we do make the most of this time) and that he needs one-on-one, nonmedical time with his parents too. Currently, this involves cooking and math quizzes with Sherin, crafts and reading with me. Sour cream coffee cake is Ben's favorite weekend treat; his tissue paper creations fill our house with color. Yet what really makes this situation bearable is knowing that we are not alone in caring for our son. Because of the nurse, Ben can attend school, and I am able to work, something many mothers of children with special health care needs are unable to do. We could not take care of Ben if it were not for the extraordinary dedication from specialty medical personnel who have devoted their lives to helping people like my son and our family. Together we have navigated unknown medical terrain. We have gatherings where our extended family members can talk to others they do not often see, distanced by hospital and city geography—the cardiologist can speak to the neurologist; the orthopedist can communicate with the pulmonologist and the physical therapist. Like our many relatives in states and countries far away, our extended family of health care professionals is aware of Ben's current health concerns, they call to check in on us, and they provide tangible, supportive care whenever they can. When we need a medical appointment urgently, the office staff who answer the telephone fit my son into the schedule as quickly as possible. We have home and cell telephone numbers for many of Ben's specialists, who know that we will respect their privacy and not contact them unless truly necessary. We have trusted e-mail exchanges with almost all of them. Recently, during a difficult tracheostomy change that led to respiratory distress, we panicked and called 911. We then called Ben's otolaryngologist at home, who, while not on call, rushed to the hospital's emergency department and attended to our son himself. This is why Ben resides at home, living as normal a life as possible. We know that if we falter in our best efforts to care for him, there are highly skilled, experienced, and exceptionally dedicated health care professionals, our extended family, who will help us when we need it most. When the home medical equipment company failed to provide us with the necessary tracheostomy supplies required to ensure Ben's health (for example, providing only 200 single-use suction catheters a month, instead of the prescribed 450), and our calls to them went unheeded, Ben's medical team faxed letter after letter to the company until they finally fixed their recurring errors. When the insurance company denied a prescribed medicine, it was Ben's medical team that corrected the problem. When we need to know more information about treatment for Ben's rare neuromuscular condition, we call or e-mail his geneticists in a hospital many states away. Not only do we receive superb medical information and advice, but we are treated like family. They ask how Ben is doing in school and at home, and they appreciate his accomplishments. We are reminded that their doors are always wide open. Years ago, when it first became apparent that Ben required a tracheostomy, and Sherin and I disagreed over whether this was the appropriate medical intervention, it was Ben's otolaryngologist who invited us to his office, on a nonclinic day, for an open and honest discussion about Ben's health. Like a family member, he had Ben's best interests in mind, but he also knew that the wider family dynamics would affect Ben's health. Our conversation addressed these factors. This type of collaborative relationship, in which health care professionals and parents—together—make treatment decisions that will work best for the family and the child, defines our family. We had similar conversations with our son's pulmonologist, from his home telephone, regarding the broader social and health implications of Ben's need for a tracheostomy. When we expressed concerns about our ability to care for a child with a tracheostomy, Ben's health care professionals boosted our confidence in our ability to do so. Conversation about difficult topics is a hallmark of any functional family, including ours. Once, we consulted a pediatric neurosurgeon who kept referring to Ben as “the boy,” despite the fact that I informed him of Ben's name twice, and many of Ben's medical reports were lying in front of him. All of this physician's questions about Ben were directed at me and Sherin, until finally I said, “Please ask Ben yourself!” He did, and was surprised by the response. The physician said, “He's very smart,” and we said, “Yes,” but the man's behavior didn't change. He wasn't able to see beyond Ben's disability. We never saw him again. The occupational therapist who has treated Ben once a week, at home, since he was 1 year old arrives at our house—to the delight of all three children. She always brings activities for each child, although she is officially treating only one. Like a family member who arrives for a birthday party for one child, she has smaller but no less important presents for the other siblings. She understands the implications of Ben's disability on Lucy's emotional health in particular, and she does what she can to include Lucy and Charlotte in her work with Ben. The nurse cardiologist, who called me proactively to schedule a checkup prior to Ben's latest surgery, remembered to use, as Ben has requested in the past, the adhesive remover before taking off the ECG stickers on Ben's body. The echocardiogram technician, recalling that Ben loves chocolate, had a special treat waiting for him at the end of the test. The winning smiles Ben flashed them made the trek to the hospital, the babysitter arrangements, the school pickup schedule change, and the rearranging of work meetings worth all of my trouble. It will never be easy to care for a child with special health care needs. But it can be easier with reinforcement from an extended family. Parenting Ben is possible through the personal connections, good conversations, accessibility, and acknowledged respect among our extended family members. When these are missing from our relationships, we feel doomed and unable to cope. We are not another report or another appointment. We are a family who needs more supportive members to keep us going. By 7 PM Sherin has changed Ben's trach ties after giving him a bath. Now there is more cleaning with peroxide and water, more suctioning, checking of oxygen levels, filling of water bottles for the air compressor, changing of tubing, restocking of supplies, and giving of medication to Ben. Sherin asks Ben some difficult math questions, and Ben adds the large sums in his head. I read the children a story. Lucy and Charlotte say good night to their brother and the machines are turned on. After several rounds of goodnight kisses, we leave our bedroom door ajar.

Journal

JAMAAmerican Medical Association

Published: Jun 27, 2007

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