Losing hope

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

part 2

10. Within a few days he was sick again. having not eaten now for over 3 weeks and not having any nutritional support at home. He went back to the local hospital acutely ill again. The doctor refused a referral to a specialist who would accept him in Memphis. We were able to get hold of the doctor who put the pacer in at Kansas City and he spoke with the doctor and told him to transfer him and had a bed waiting. We made the transfer arrangements through his insurance and on the day of transfer, the doctor abruptly just discharged him!!! Right in the middle of a transfer!! He also called the transportation part of medicaid and told them he was no longer sick. He was brought home laying in the car with his head in a trashbag throwing up. We had to drive him in that condition the 5.5 hours to Kansas. When he got there and had labs drawn, he was so anemic he required an emergent blood transfusion. Evidently the labs had not been followed at the prior hospital. We filed a complaint and got the usual answer "sorry." We talked with the director of the clinic where his primary was located and she stated he told her my son was in Kansas but gave no other information.

11. He came home from that admission in Kansas on a new medication to see how it would work before consideration of a sphincterotomy (his pyloric sphincter is also paralyzed so it will not open to allow food to pass). After two weeks he became ill again and went back to the local hospital. He was there about a week and discharged while still ill. We took him immediately to a hospital 50 miles away and it was a good thing we did. A nurse at the local hospital had ordered him to take a shower and he told her he couldn't until his occlusive dressing over his port site was replaced as it was loose (he had an arterial port for access and for IV fluids). She told him don't worry about it and go take a shower. When he came out of the shower, he told her again it needed replaced and she came in, did not wash her hands, and taped the same old dressing in place. Two days after being admitted to the other hospital he developed such chest pain they called in the cardiac team. His port had become severly infected, so much so it had to be removed surgically and they had to scrape the infection out. During this time he became hallucinatory and developed an extreme cough. We asked for the attending to contact us several times to no avail. We kept asking the nurse about his mentation and the severe chest pain. He also became profoundly weak. Today we called administration and they were able to get the doctor to call us. I discussed my concerns about his mentation and he wanted an example and I told him my son heard the monitor beeping and thought it was a machine that awakens you if you have a nightmare. I again discussed my concerns over the severe coughing. His reply was that the insurance had told them to discharge him NOW. I expressed concern because he still had chest pain, was still weak and still hallucinating.

12. When he got home he was so weak he fell down the stairs. His fever stayed at 102. They did not do a chest x-ray to even check for pneumonia. He is still hallucinating and coughing horribly and right now is back in another ER.

I can understand if a mistake is made every now and then, but how many times is somebody going to nearly kill my son before they succeed? Administration doesn't seem to care...he's just a drop in the bucket. How do I get their attention? It should be noted that we never received approval or denial of his Workmens Comp either..no lawyer would touch it because of the severity of his case and Comp won't tell us anything. I would appreciate any information.

Moving all over without getting the WC case approved will make this difficult, you are going to have to try to get the worker's comp case established, have you applied for social security yet since the worker's comp hasn't been approved? The date of SSDI should be based on the onset of illlness although there is a time limit, also medicare starts after 29 months.

He received his disability within 90 days because of the severity of the illness. Moving shouldn't have anything to do with the comp since it has to be filed in the state where the injury occurred and it WAS filed and they did receive it, they just refuse to respond to inquiries and the attorneys back there won't touch it.

gnomad
I certainly understand why an attorney won't even consider involving himself or herself in this. It would be an impossible task of unweaving the events, effects, etc.

I understand why he is receiving less than therapeutic medical care, too. There is no continuity of care. If you are in the medical field, or healthcare work in general, you must know that continuity of care is of utmost importance.

At this point, your best bet is to find somewhere like the Mayo clinic or Johns Hopkins, where the impossible is often possible. Take your son there and leave him in the care of the hospital and the hospital's staff. If there is any measure of improvement that can be gained, it will require years of treatment at one facility. The Mayo clinic and Johns Hopkins have longterm treatment options available for their clients; if one of these facilities accepts him as a patient, do not remove him from their care.

EC

Perhaps you didn't read what I wrote...he was already seen at Mayo, but they do not accept walk-in patients, it takes months to get a consultation appointment. No he has not had continuity of care because if he had, he would have been dead by now. The teaching hospitals would have 5+ people see him, most residents and students, and then once discharged we would call back with questions/problems and whoever the new person on staff was would say "I haven't seen him so I can't say what should be done." We did not randomly take him just to different hospitals. We took him according to the lists of accredited specialists in his field of need. The plan was hopefully to get him established with a group of physicians for all specialties instead of having the GI in one city, the endocrine in another. What would you do if your child was critically ill and the ONLY specialist in town said "I can't treat this, it's too severe.." Would you take him home and let him die or go elsewhere for treatment? Should I have taken him right back to the doctor who thought his scarred arms were from heroin? I think not. If I hadn't been in the medical field, he already would have died. I feel sorry for the people who have no medical background and just accept whatever the doctor says. I also subscribed to a paid service to check backgrounds on doctors and found that just one of them I investigated had moved to 9 different cities due to complaints! You CANNOT trust that every physician you see is even certified in a specialty much less be remotely qualified.

During this last admission when he was having such severe chest pain, I begged for a chest x-ray before discharge because he was coughing so hard he was choking. Nooooo...they didn't feel it was necessary. Well know what, he's RIGHT back in the hospital with bilateral lower lobe pneumonia. He suffered with it three days at home, unable to eat or drink, before the home health nurse finally called them and told them this boy is SICK, he's going into shock, and he HAS to be readmitted.

I work for doctors...I correct their paperwork when they fall asleep during dictations and enter the wrong medications. I have had a surgeon removed who came in to the hospital to perform surgery while absolutely falling-down intoxicated. I have caught errors on charts where they prescribe medications listed in the list of allergies. I've told doctors to wash their hands after handling infected wounds and going on to the next patient without washing his hands. If people knew what REALLY goes on, they would go back to granny's rheumatiz medicine and not even go into a hospital!! No my friend, it's not incontinuity of care, it's the lack of qualified responsible medical care.

Johns Hopkins, while wonderful in research and for some specialties, is not all its cracked up to be either. My daughter has RP, a degenerative eye disease. She went there for diagnosis when she was 3. We were told "she's going blind, no need for corrective lenses, just accept and let it happen." She's now 13, still has some vision, and another specialist told us if we hadn't continued to get corrective lenses to assist with what vision she does have, it would have damaged her eyes further. Never never never accept just one opinion. You are gambling with your health and your life.

gnomad
Yes; I read that he had been at the Mayo clinic, which is one reason I suggested leaving him there.

You can not expect physicians or hospitals to constantly start over, trying to fix past mistakes, complete treatments, etc. and to actually make any progress. You also cannot expect to be taken seriously when it appears that on your non-MD, non-specialist status, you yank your son out of one facility and move his care to different states based on what you consider to be medical necessity and better MDs.

Hospital-jumping and physican-hopping are recognized immediately by healthcare providers and signals that the care rendered 'now' will not be effective because there won't be time to treat the current conditions, review care and progress from day one, develop a plan of care, and implement the plan. Before they can do that, yank--you've dragged him to another state and another facility or even to another home (his father).

If your son has any hope at all, you will let go of controlling his care and you will allow him, as an adult, to manage his own care with the healthcare professionals and the healthcare setting of his choice (from the ones available).

Your son doesn't stand a chance of a medical malpractice suit against anyone and if at some time he had a valid claim, you have seen that it no longer exists.

I don't doubt for one second that you are well-intentioned and totally devoted to your son; however, that does not keep me from believing that your medical decisions are his single, greatest obstacle to achieving his maximum recovery potential.

It's a legal advice site, so I'll end this by restating that because of the numerous providers and the various treatments, I do not see a viable medmal claim, regardless of how many acts of negligence may have occurred.
EC

Jesus Lord Christ Almighty ....Mayo, Tulane, KUMC, countless hospitals, numerous specialists, a grab bag of ER's....they were all incompetent??? If this is true, the entire medical system is too screwed up to help you. What could anyone here possibly suggest that would change that?

I believe you are just (very understandably) frustrated. Gastroparesis is frequently refractory and may progressively worsen over time no matter what treatment is provided. In addition to this frustration, or perhaps because of it, you have a gigantic chip on your shoulder regarding the medical profession.

Ellencee is absolutely right. Find a reputable facility and STAY PUT long enough for the physicians there to become very familiar with the particular course of your son's presentation. I understand the natural impulse to hop from place to place but this just makes things more difficult. There is not really any alternative.

How do I get their attention?

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Legally you mean? I have absolutely no idea.

It should be noted that we never received approval or denial of his Workmen's Comp either..no lawyer would touch it because of the severity of his case and Comp won't tell us anything. I would appreciate any information.

Click to expand...

It has nothing to do with the "severity" of the case. Legally, severe makes a good case. The problem is the enormous complexity, most of which is the result of the incomprehensible web of hospitals, doctors, and clinics that have touched this case, and the fact that the gastroparesis is a known sequela to diabetes, which your son has, and which has nothing to do with the Campylobacter infection, and therefore a link to the alleged work injury is tenuous at best.

It has already been established through Mayo that his gastroparesis WAS from campylobacter since 1) he had NO stomach problems until the time of the infection and 2) he had a known exposure and became sick within hours of the infection. This cause for gastroparesis is widely known in states who have chicken processing plants and in most "normal" patients, the infected is found and treated. His problem is that it was misdiagnosed as gastroenteritis.

Since my last posting, he developed a Staphylococcal infection in his port site due to a nurse who did not wear gloves and placed back on a contaminated bandage that had fallen to the floor. This nurse, we found out, has done this in the past. The same facility had to throw away all of their flu vaccines because a nurse placed a used needle back into the vial and didn't know which one she had contaminated.

As for the advice of find a good doctor and stay there, boy that's our dream all right. Mayo does not offer primary care, therefore is not an option. All they had to offer was the diagnosis and the botox injection, but he now has such scar tissue on the sphincter that cannot be repeated. Yes the state of our healthcare is extremely scary. As it may be competent for most mundane illnesses, for those more seriously ill consumer beware!! We have never been out to sue anybody, my only goal is to find competent doctors who will help him. In Florida, the primary physician was very aware of what he has and why he has it, yet could not get Mayo there to give him an appointment sooner than nearly 4 months away and his health is so poor he cannot wait that long.

Added note: The physicians here referred him to a very well known and respected hospital in St. Louis for a gastrectomy. The primary spoke with the accepting physician and explained in detail why he was to be transferred and for what. Nine days later he still had not been seen by a surgeon because they mistakenly thought he was there for his diabetes, and could not figure out why he had such a prolonged stay when his blood sugars were not elevated!! They finally discharged him and said they would call with a followup appointment with a surgeon, but to date, 8 weeks later, they have not. Now you tell ME this is my fault?

As far as letting him, as an adult, take care of himself...would you be able to talk with a doctor when you are leaning over a stretcher puking your guts out? Neither can he. Just yesterday he called from the hospital nearly in tears because his endocrine doctor put him on a 3500 calorie per day diet, yet his primary put him on a 1200 calorie gluten-free diet, yet he has never had evidence of celiac disease. So while the nurses are trying to figure out which diet they are supposed to follow, he hasn't eaten in over 24 hours. But you know what, I'll just leave him there because they obviously know what they are doing.

gnomad I'm just another visitor to this site but I sympathize with your situation and our prayers are with you and your son. When medicine fails there is an alternate source of healing. I was just curious where you went for info on health care professionals. Again, I'm sorry for what you and your son have been through.