Nothing About Us Without US Part Four Chapter 38 1 of 15 http www dinf ne jp doc english global david dwe001 dwe00149 htm part4chap38 Nothing About Us Without Us Developing Innovative Technologies For By and With Disabled Persons PART FOUR WHEELS TO FREEDOM 239 CHAPTER 38 Osvaldo A Triplegic Boy with Many Challenging Needs OSVALDO s childhood was like that of many boys in a poor urban community He lived with his ailing mother on a hill on the outskirts of Culiacan the state capital of Sinaloa Mexico His father had abandoned the family years before His mother worked in a factory for wages so low that sometimes there was little to eat Osvaldo went to school but he often skipped classes to do odd jobs or to play When he was 13 years old an event happened that drastically changed Osvaldo s life He was playing with friends on the roadside outside the family hut when a truck parked at the top of the hill and the driver got out Then the hand brake failed and the truck rolled down the steep dirt road toward the children at play It suddenly pitched off the narrow road straight into the children One child was killed four were injured Because the driver had not been in the truck and had slipped the police a bribe he was not held responsible After he was hit Osvaldo dazed and bleeding tried to stand up But he could not move his legs or his right arm Neighbors took him to the hospital The doctors found his spinal cord was crushed at mid back level T6 He had a double fracture of his right leg above and below the knee His right shoulder was broken and dislocated with nerve damage that left his right hand and arm paralyzed So it was that at age 13 Osvaldo became triplegic paralyzed in 3 of 4 limbs He had lost all movement and feeling in his lower body and had no urine or bowel control In the hospital his broken spine was stabilized surgically with metal rods Fortunately Osvaldo s mother had social security insurance which covered most of the medical expenses On his release from the hospital Osvaldo was taken by ambulance to his home Unfortunately neither he nor his mother had been given instructions about prevention of pressure sores and urinary infections So day after day Osvaldo lay on his back on a burlap cot without moving A month later when a nurse made a home visit she found that his back buttocks and heels were covered with pressure sores The hospital then provided an egg crate foam mattress and a nurse instructed the boy s mother to Turn him frequently from side to side But this was easier said than done as his mother soon discovered Osvaldo had sunk into severe depression which expressed itself as anger directed mostly at his mother His paralyzed right hand was extremely sensitive it gave him unbearable burning pain especially when it was moved He rested it over his chest without moving it for weeks and months In time his right arm became stiffly fixed in front of him He was so afraid of having his painful hand touched or moved that he refused to let his mother get near it Whenever she tried to move him he would weep and protest Using his good left arm he fiercely fought off her attempts to turn him on his side Because of his lack of urine and bowel control she had a hard time keeping him clean 2 17 2007 9 33 PM Nothing About Us Without US Part Four Chapter 38 2 of 15 http www dinf ne jp doc english global david dwe001 dwe00149 htm part4chap38 240 PROJIMO TO THE RESCUE In November 1991 on a visit to the capital city two disabled workers from PROJIMO learned about Osvaldo and visited his home Five months after his accident the boy was near death Emaciated anemic and very depressed he had deep pressure sores a urinary infection and chronic fever His doctors had not stressed the importance of drinking lots of water to reduce the risk of urinary infection Adding to the danger they had not changed him from a permanent catheter urine draining tube to intermittent catheterization see page 147 His dark urine had so much crud in it that the catheter often clogged His pressure sores which his mother did her best to clean and bandage were infected and had black necrotic dead areas The worst sores were on the back of his ankles They formed after the visiting nurse worried about the sores on his heels told his mother Keep a rolled up towel under his ankles His mother had carefully followed the nurse s orders Four months later when the PROJIMO workers visited the home deep sores had formed where the towel was still obediently positioned The sore under the left ankle was so deep that it bared the Achilles tendon This was a powerful lesson for the PROJIMO workers They saw the danger of simply giving cookbook like instructions without explanations On the contrary it is important to Help people to fully understand the reasons for doing things so that they are able to make well informed decisions based on their own observations and changing needs Further complicating Osvaldo s condition was his delicate often angry mood his fear of pain or injury and the excruciating sensitivity of his paralyzed right hand Yielding to his tearful protests his mother had given up attempting to turn him onto his side or belly So for five months he had lain on his back his pressure sores getting larger and deeper and his body growing as stiff as a board On seeing Osvaldo the PROJIMO workers felt that due to the difficult combination of physical and emotional needs more might be accomplished in their small community rehabilitation center than in the home They invited him and his mother to spend a while at PROJIMO At first Osvaldo was afraid to leave home or even to be moved from his cot But the warmth and concern of the PROJIMO workers gave him a new sense of hope Gathering courage he accepted their offer The next morning with Osvaldo lying on a foam mattress in the back of a station wagon the group made the 4 hour trip to PROJIMO The Need for a Creative and Loving Approach The complexity of Osvaldo s needs called for very caring rehabilitation and innovative assistive equipment His urinary infection and sores required urgent attention For the former the team gave him antibiotics and encouraged him to drink lots of fluids However he often refused to drink even when we explained its importance Since Osvaldo s favorite drinks were orange juice and hot chocolate we pampered him with all of these he could drink As his urinary infection got better so did his mood and appetite The team put Osvaldo on a high calorie high protein