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March 27, 2005 Internship Journal
The month of March brought a rehab elective. For the first three weeks I was on the pediatric service. I chose to do this because I have found that I really enjoy working with kids with disabilities. I am not sure if I will do a fellowship (a subspecialty within a specialty) or not, but if I had to choose one today, it would be pediatrics.
My first admission was a four year old boy named Jason. He was a healthy three-year-old until January 2004 when he got viral meningitis/encephalitis (inflammation/infection of the brain). As a result of this, he stopped communicating and eating. He was also no longer able to walk without assistance. He began walking on his toes and required maximal assistance because of problems with his balance. He also lost all of his fine motor skills. He remained like this until January of this year. At this time, he was still walking on his toes, but with less assistance, and he had regained some of this motor skills. He presented to our clinic with these improvements in February, so it was decided that he should be readmitted for inpatient rehab.
Without going into too much more detail about him, he is unable to communicate at all and he does not have any safety awareness. Because of this, he requires a veil covering over his bed. This is basically a canopy over the bed with netting that does not allow the patient to get out of bed. Every morning, I would go in to Jason's room and say hello to him. Sometimes he would be crying out, and sometimes he would be throwing his toys around. Either way, he would stop what he was doing and come up to the side of the bed and push on the netting. I would speak to him like he could understand me and try to touch him through the netting. Sometimes he would push harder on the netting or try to pull the netting up from the bottom. This example of motor planning was certainly an improvement, but it still broke my heart. It seems cruel to restrain him in his bed this way, but the flip side is to either tie him down, or have him jump out of bed and hurt himself.
Throughout the month, Jason improved some with his fine motor skills and his gait, but not any with his communication. Every morning, as I wheeled into his room, I would hope that that would be the morning that he would say hi to me. Sometimes when I was in his room, he would look at me while I was talking to him, and then drop to all fours and scream out while he beat his hands on the bed. My interpretation of this was that he wanted to communicate with me, but was unable to, and therefore became incredibly frustrated. It was very sad to see this cute, little four year old in this condition.
My second admission was a 17-year-old male named Kevin. He suffered a spinal cord injury one level below mine in January as a result of a car accident. He is a youth minister, and sings in his choir. He is a junior in high school who was planning on going to college to major in arts and music. I think before speaking to me, he thought that was now impossible. He did not tell me this, but that was my impression when I told him that doing that would be no problem. It was very nice for me to be able to tell him that now it might be a little more difficult, but it was certainly very realistic. Had he told me that he had planned on running track there, I would have told him that was not realistic, because I never want to give someone false hope. Luckily, his goal is still very attainable.
We had several conversations this month. Unfortunately for him, he has a very spastic bladder. As a result of this, he commonly leaks in between his in and out catheterization's. He therefore has to wear diapers and is constantly having to get changed. When I was taking care of him, we tried a couple of different medicines, but none of them seemed to help. Multiple times, he has asked me how long he is going to have to wear diapers. I was saddened by this question every time. Having a spinal cord injury at the age of 17 is enough to deal with, and then having to face the fact that he might return to school wearing diapers made the situation even worse.
There is another young guy with a spinal cord injury that I have been speaking with the last few months. His name is Mike. I learned about him last fall through one of the therapists. She had asked me to go talk to him because he was telling people that he wanted to die.
When I first started speaking to him, he acted very disinterested. I had heard that he did not like dealing with white people. I also learned that he was injured during a drive-by shooting that was drug related. I put these things aside though and tried to be as nice as I could. Over the next couple of visits, he warmed up to me and began to ask questions. I saw him a handful of times over the next two months while he was in the hospital. He had a long, complicated hospital course, including at least one return visit to the ICU. He eventually made it to rehab, and I visited him there a few more times. By this time, every time I came to visit him, I was greeted with a big smile.
His injury is one level above mine, making him a C-4 quadriplegic, which means that he essentially has no use of his arms. He is not able to feed himself, scratch his nose, or do anything that requires him to raise his hand above his chest. I had really hoped that he would get at least the use of one bicep and some shoulder strength, like I have, but it did not happen. When he was finally discharged home, he could not do a single thing for himself.
Since his discharge, he has been hospitalized three times because of pneumonia and colitis. I was actually called to come see him one night when I was on call in February. His oxygen saturation's had decreased, and I feared that he would have to be intubated and transferred to the ICU. Luckily, all he needed was some suctioning.
I try to keep all of my interactions with him positive, but it has been difficult. In addition to all of his medical problems, he has had a couple more bad breaks. He and his mother live in a split-level apartment that also has a few steps outside, so he is only able to access one-room. Because of this, his therapists did not think he justified having a loaner power chair (until his is assembled). Therefore, he is stuck in bed 24 hours a day. In addition to this, the home health agency that Medicaid pays for does not send someone out every day like they are supposed to. They completely take advantage of his situation. Some people have asked me why I care about him so much when he was injured because of the lifestyle he chose. I can't answer that for sure. My guess is that I think he has paid too big of a price. His life has become lying in bed and watching television or movies, with frequent visits to the hospital.
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