G
gnomad
Guest
What is the name of your state?What is the name of your state? Illinois
I will try to make this brief, but it's very hard. I am sitting here heartbroken because once again medicine failed my son. His name is Chris and he's 23. Three years ago this November, he went to work in a chicken processing plant in West Virginia. They did not allow them to wear protective masks or gloves although they dealt with diseased, infected chickens daily. After being there about a week, he was working the disassembly line and a piece of raw chicken went into his mouth. Within a few hours, the nurse called me and said to come pick him up as he was vomiting and having diarrhea. I took him to the local ER. My thoughts were salmonella. ER staff said it wouldn't "kick in" that fast and gave the diagnosis of gastroenteritis. They did a stool culture and said they would notify us if it came back positive.
By 12 hours later he was worse and went to his doctors office. He actually threw up on the doctor. Again the diagnosis was made of gastroenteritis. By 3 weeks later he had lost 40 pounds and was bed-bound. He now weighed 110. The vomiting and diarrhea continued which made it esp. hard on him since he is diabetic. We took him across the line into Maryland to another ER and they also did blood and stool cultures. A few hours later they notified us that he had Campylobacter, and that they obtained the results from the first ER which showed yeast, but we had not been notified. They put him on a 7-day course of antibiotics and CDC, the health department, and his employer were notified and appropriate Workmens Comp papers filled out.
He had very little improvement. We decided to leave the state, expecting him to recover, so we went to Missouri where there were more job opportunities. Within a week after getting there, the projectile vomiting and diarrhea once again started. He had lost another 20 pounds, now down to 90. The local ER sent him to University Hospital where he had testing and was diagnosed with total gastroparesis. He had a J-tube placed and we were told if he did not get better within one year, he would need a gastrectomy. He continued to deteriorate and his weight dropped to 83 pounds. He had several more ER visits and hospitalizations with just supportive care provided. Many of his episodes were life threatening as he went into shock. On one occasion he had a massive GI bleed and was sent to a hospital in St. Louis. After 3 days they still had not checked for the site of bleeding and I demanded a GI consult. The physician finally did come in and rather irritated asked me why I wanted to see her. When I told her he was transferred for a massive GI bleed, she went pale. They took him for an EGD but no further bleeding was found. To make things a little shorter now I will only list some of the things what were done to him:
1. We went to visit him at one hospital and he had a left-sided facial droop and flapping tremor. We called the nurse who called the doctor several times, who refused to come in and said he would check on it in the morning. Upon reseaching the medications, I found his symptoms were most probably due to the combination of drugs he was receiving. He symptoms worsened and we had to pull him out and take him to another hospital.
2. At the next hospital, the doctor was not familiar with gastroparesis and could not figure out why he had such pain and labeled him a psychiatric case. Our own investigation and research (I am in the medical field) found that gastroparesis is extremely painful. He had been in pain for over 7 months now without so much as a Tylenol. He was discharged just as sick as he went in and told to follow-up with a psychiatrist.
3. Yet another hospital, same diagnosis. I asked for transfer to KUMC as I had heard of Enterra therapy, which is a gastric pacemaker for people with gastroparesis. They had not heard of it, therefore it did not exist and our request was denied. He was in and out of this hospital several times and on the last visit to them, they failed to give him insulin during his entire stay with the nurse stating "I didn't have orders for it." Any of you who have worked in/around hospitals know that if you don't have orders, you call for them. By the time he was nearly comatose, they decided to transfer him to KUMC, ONLY after we called the administrator of the hospital. Upon arrival to KUMC, his blood sugar was over 1000. We filed a complaint with the hospital and their reply was "sorry."
4. He had the pacer put in and was discharged on over 40 pills per day including morphine. He was a zombie when he would even wake up. After a short period of improvement, the same cycle started again. I later learned that this therapy has a very high failure rate. Since it was a 5-hour drive each way, we decided to relocate closer to a major medical center and went to Dallas, where his father lives.
5. There, one particular hospital refused to call in consults saying they did "cash only" business. We found out from Medicaid (which he is on due to total disability) that this is a common problem there. He had been switched from morphine to methadone prior to going to Dallas, the specialist at KUMC saying this illness is excruciatingly painful and the pain must be controlled. We soon learned he would not get any help in Dallas.
6. We went to Florida where his grandmother lives. The day after arrival he went to the local hospital which is a chain hospital of a major teaching hospital there. We took records with us, as always, to make it easier for the doctors to understand. The doctor had no interest. He saw that he was on methadone and that his arms are horribly scarred from the 30+ hospitalizations, assumed he was a heroin addict and over our objections, sent him in handcuffs to the state mental hospital via deputy. The deputy apologized the whole way. Very shortly after arrival, the hospital called us and asked why he was there and said "this boy is acutely ill, NOT a drug addict" and they sent him home in their van. We took him to the main branch of the hospital in Gainesville and he lay there over 9 hours. He started to feel shaky and we told the doctor he needed his sugar checked and her reply was "he wouldn't go low THAT fast." The whole group of doctors and nurses were standing around the desk laughing and talking. He began to feel like he would pass out so we took him out to the car to check his sugar. They didn't even notice us leave. His blood sugar was 30 and we had to run back in for a Coke. We filed a complaint with the hospital who sent him to the state mental hospital and the response was again "sorry."
7. We took him to Mississippi where we had other family members, now practically homeless from having to stay in motels while trying to get him help. He was in the hospital the whole first month we were there and sent to the University Hospital in Jackson where studies were repeated and the same diagnosis was made, total gastroparesis. One particular hospital along the coast made referral to Tulane for a gastrectomy, but the insurance refused the admission saying they only allow 30 hospital inpatient days per year.
8. Out of money and options, we sent him to his dad, who had relocated to Arizona. There he had 20+ more hospitalizations in a few months and were convinced his illness was due to abuse at home. He was finally able to get a referral to Mayo, who did all the appropriate studies and made the exact same diagnosis. They treated him with the experimental treatment of botox injections into his sphincter and this was a miracle. He ate for the first time in two years, gained weight, and was back to his old self. After his second series of injections, he returned home with us, by now we were living in Illinois near my mother-in-law.
9. We established him with a primary here and had a referral letter from Mayo to a physician in St. Louis who performs the botox. The doctor told us if he became acutely ill, he would transfer him out of the local small hospital and this was fine with us. He did well the first month and then when the botox started wearing off, he became acutely ill again and was admitted to the local hospital. For those of you who don't know, with gastroparesis, the stomach does not move food through. It sits there until it is vomited back up. During the entire first admission, he was admonished for not eating, I mean shouted at, even while vomiting. The doctor finally told him "lay there and die" and told us "I do not take care of sick people." We asked for him to be transferred out as he was not improving and named the hospital the particular doctor works at who is familiar with the pacer and the botox. They refused since it was not one of their chain hospitals. Only after their affiliate hospital said they could not care for him due to the severity of his illness did they transfer him. At the hospital, we found out the doctor was on vacation and then the doctors office said they were not accepting new patients. They gave supportive care of fluids until he was able to be discharged.
See part 2
I will try to make this brief, but it's very hard. I am sitting here heartbroken because once again medicine failed my son. His name is Chris and he's 23. Three years ago this November, he went to work in a chicken processing plant in West Virginia. They did not allow them to wear protective masks or gloves although they dealt with diseased, infected chickens daily. After being there about a week, he was working the disassembly line and a piece of raw chicken went into his mouth. Within a few hours, the nurse called me and said to come pick him up as he was vomiting and having diarrhea. I took him to the local ER. My thoughts were salmonella. ER staff said it wouldn't "kick in" that fast and gave the diagnosis of gastroenteritis. They did a stool culture and said they would notify us if it came back positive.
By 12 hours later he was worse and went to his doctors office. He actually threw up on the doctor. Again the diagnosis was made of gastroenteritis. By 3 weeks later he had lost 40 pounds and was bed-bound. He now weighed 110. The vomiting and diarrhea continued which made it esp. hard on him since he is diabetic. We took him across the line into Maryland to another ER and they also did blood and stool cultures. A few hours later they notified us that he had Campylobacter, and that they obtained the results from the first ER which showed yeast, but we had not been notified. They put him on a 7-day course of antibiotics and CDC, the health department, and his employer were notified and appropriate Workmens Comp papers filled out.
He had very little improvement. We decided to leave the state, expecting him to recover, so we went to Missouri where there were more job opportunities. Within a week after getting there, the projectile vomiting and diarrhea once again started. He had lost another 20 pounds, now down to 90. The local ER sent him to University Hospital where he had testing and was diagnosed with total gastroparesis. He had a J-tube placed and we were told if he did not get better within one year, he would need a gastrectomy. He continued to deteriorate and his weight dropped to 83 pounds. He had several more ER visits and hospitalizations with just supportive care provided. Many of his episodes were life threatening as he went into shock. On one occasion he had a massive GI bleed and was sent to a hospital in St. Louis. After 3 days they still had not checked for the site of bleeding and I demanded a GI consult. The physician finally did come in and rather irritated asked me why I wanted to see her. When I told her he was transferred for a massive GI bleed, she went pale. They took him for an EGD but no further bleeding was found. To make things a little shorter now I will only list some of the things what were done to him:
1. We went to visit him at one hospital and he had a left-sided facial droop and flapping tremor. We called the nurse who called the doctor several times, who refused to come in and said he would check on it in the morning. Upon reseaching the medications, I found his symptoms were most probably due to the combination of drugs he was receiving. He symptoms worsened and we had to pull him out and take him to another hospital.
2. At the next hospital, the doctor was not familiar with gastroparesis and could not figure out why he had such pain and labeled him a psychiatric case. Our own investigation and research (I am in the medical field) found that gastroparesis is extremely painful. He had been in pain for over 7 months now without so much as a Tylenol. He was discharged just as sick as he went in and told to follow-up with a psychiatrist.
3. Yet another hospital, same diagnosis. I asked for transfer to KUMC as I had heard of Enterra therapy, which is a gastric pacemaker for people with gastroparesis. They had not heard of it, therefore it did not exist and our request was denied. He was in and out of this hospital several times and on the last visit to them, they failed to give him insulin during his entire stay with the nurse stating "I didn't have orders for it." Any of you who have worked in/around hospitals know that if you don't have orders, you call for them. By the time he was nearly comatose, they decided to transfer him to KUMC, ONLY after we called the administrator of the hospital. Upon arrival to KUMC, his blood sugar was over 1000. We filed a complaint with the hospital and their reply was "sorry."
4. He had the pacer put in and was discharged on over 40 pills per day including morphine. He was a zombie when he would even wake up. After a short period of improvement, the same cycle started again. I later learned that this therapy has a very high failure rate. Since it was a 5-hour drive each way, we decided to relocate closer to a major medical center and went to Dallas, where his father lives.
5. There, one particular hospital refused to call in consults saying they did "cash only" business. We found out from Medicaid (which he is on due to total disability) that this is a common problem there. He had been switched from morphine to methadone prior to going to Dallas, the specialist at KUMC saying this illness is excruciatingly painful and the pain must be controlled. We soon learned he would not get any help in Dallas.
6. We went to Florida where his grandmother lives. The day after arrival he went to the local hospital which is a chain hospital of a major teaching hospital there. We took records with us, as always, to make it easier for the doctors to understand. The doctor had no interest. He saw that he was on methadone and that his arms are horribly scarred from the 30+ hospitalizations, assumed he was a heroin addict and over our objections, sent him in handcuffs to the state mental hospital via deputy. The deputy apologized the whole way. Very shortly after arrival, the hospital called us and asked why he was there and said "this boy is acutely ill, NOT a drug addict" and they sent him home in their van. We took him to the main branch of the hospital in Gainesville and he lay there over 9 hours. He started to feel shaky and we told the doctor he needed his sugar checked and her reply was "he wouldn't go low THAT fast." The whole group of doctors and nurses were standing around the desk laughing and talking. He began to feel like he would pass out so we took him out to the car to check his sugar. They didn't even notice us leave. His blood sugar was 30 and we had to run back in for a Coke. We filed a complaint with the hospital who sent him to the state mental hospital and the response was again "sorry."
7. We took him to Mississippi where we had other family members, now practically homeless from having to stay in motels while trying to get him help. He was in the hospital the whole first month we were there and sent to the University Hospital in Jackson where studies were repeated and the same diagnosis was made, total gastroparesis. One particular hospital along the coast made referral to Tulane for a gastrectomy, but the insurance refused the admission saying they only allow 30 hospital inpatient days per year.
8. Out of money and options, we sent him to his dad, who had relocated to Arizona. There he had 20+ more hospitalizations in a few months and were convinced his illness was due to abuse at home. He was finally able to get a referral to Mayo, who did all the appropriate studies and made the exact same diagnosis. They treated him with the experimental treatment of botox injections into his sphincter and this was a miracle. He ate for the first time in two years, gained weight, and was back to his old self. After his second series of injections, he returned home with us, by now we were living in Illinois near my mother-in-law.
9. We established him with a primary here and had a referral letter from Mayo to a physician in St. Louis who performs the botox. The doctor told us if he became acutely ill, he would transfer him out of the local small hospital and this was fine with us. He did well the first month and then when the botox started wearing off, he became acutely ill again and was admitted to the local hospital. For those of you who don't know, with gastroparesis, the stomach does not move food through. It sits there until it is vomited back up. During the entire first admission, he was admonished for not eating, I mean shouted at, even while vomiting. The doctor finally told him "lay there and die" and told us "I do not take care of sick people." We asked for him to be transferred out as he was not improving and named the hospital the particular doctor works at who is familiar with the pacer and the botox. They refused since it was not one of their chain hospitals. Only after their affiliate hospital said they could not care for him due to the severity of his illness did they transfer him. At the hospital, we found out the doctor was on vacation and then the doctors office said they were not accepting new patients. They gave supportive care of fluids until he was able to be discharged.
See part 2