My wife decided to have weight loss surgery in the summer of 2000. We made an appointment with our surgeon, who was also going to perform the same surgery on a family friend. We began all of the pre-op testing and my wife passed all of them. They consisted of cardiac, gallbladder, stress tests, and pulmonary. My wife had been diagnosed during the summer with asthma and a partially paralyzed diaphragm under the right lung. Although she had breathing problems from time to time, they were mostly caused by the recent weight gain and water retention. She is also a diabetic but was not insulin dependent. She was on medication for that. Her sugar had been under control for most of the summer, up to the point of surgery.
My wife was originally scheduled to have surgery in the late fall. When she went to her Pulmonologist to be cleared for surgery, he would not clear her as her breathing was not adequate enough. One month later, she was cleared for surgery and had the surgery in early December 2000.
The surgery itself went well. The doctor came out and told me that everything was fine and she was doing well. This was on a Wednesday. She was on a ventilator for a short time during and after surgery. The ventilator was removed prior to going into the recovery room. She stayed in recovery until Friday when she was put into the Surgical Intensive Care Unit (SICU). Her breathing was labored during the day and was back on the ventilator by evening, which is when our nightmare began.
From the first time I walked into the SICU on Friday, I knew that something was not right. I sensed it and did not have a good feeling. The nurses seemed stressed and not friendly. The SICU was very busy. They were very strict with visiting hours which I was not comfortable with. I have always been very overprotective of my wife and could not stand the fact that she was alone in there. It would depend on the nurse on duty whether or not I could stay after visiting hours.
While my wife was on the vent, she was sedated with a drug called DIPRIVAN, which is a non narcotic drug that can put a person to sleep almost immediately and by taking them off of the drug, they can wake up almost immediately. I found out later from a source that works in this hospital that DIPRIVAN in the "mother's milk" of the SICU.
I was told about a week after the surgery that my wife would have to receive a tracheotomy because weaning off the ventilator would be a slow process and a breathing tube cannot stay in the throat for more than 14 days as it will cause damage to the vocal cords. It was determined that she would be scheduled for surgery the following Monday, 5 days later. My fist reaction was that they were waiting too long to do this and why couldn't they do it right away. After all, if an emergency patient came in off the street, they would receive it immediately. I was told that they had to book the operating room and the surgeon. While we were waiting for this procedure, my wife was "sleeping" because of the DIPRIVAN and guess what, decubitis ulcers (bed sores) started to develop. Additionally, my wife was being fed through a feeding tube in her nose and the feeding caused her to have severe diarrhea. I questioned the nurse about the DIPRIVAN and was told that her being asleep would make her more comfortable. Although I agree with that to a point, the patient is not cared for as much and not kept as clean. Because they were so strict with the visiting hours, I was only allowed there 2 hours in the morning and 2 hours in the evening.
Within 3 weeks of the surgery, my wife had decubitis ulcers, which were being treated by the nurses, but not proactively; a raw butt from diarrhea, c-dif infection, malnutrition due to the feeding not being enough to nourish her with her new smaller stomach, and the start of sepsis infection. In addition, when the diarrhea would not stop, they stopped her feeding and she became fully malnourished.
During her stay at this hospital, I felt very out of control as no one would listen to me about her care. I hired private duty nurses aides so I knew there would be someone with her at all times, who was on my side.
The feeding tube came out of her nose and it was determined that they would put it back in surgically, into her stomach this time. This was better because it is very uncomfortable to have a tube in your nose. My wife had a special bed, designed for a heavy person. They took her down for this procedure, in the bed, and while down there, they broke the bed. When they brought her back, the bed was flat and her head was lower than her feet. Thank God they had a pillow under her head. I said something to the nurse and the resident and they said that they had a call into the bed company and that a new bed should be there in a few hours. The bed never came and my wife was awake during this time and very uncomfortable. I asked the nurse to put her in a regular bed until the new one arrives and she stated that my wife was too large and heavy to move (it's funny, when she first arrived, she was in a regular bed; she was never that large) to another bed, so they got pillows and tried to put them under the mattress, but it did not work. This night became 3 days with a broken bed and during this time, they kept her sleeping again with DIPRIVAN, as she was uncomfortable and upset. I finally went nuts at this point and became so violent that they had a bed there that night. I also told them that if I ever came into the room and saw a white bottle of DIPRIVAN hanging by my wife's bed, I would immediately contact my Attorney. After making that statement, a funny thing happened; the doctor in charge came to me the next day and told me that it is not his policy to allow a family to hire private duty nurses aides. I mentioned to him that I have had them there for over 2 weeks and he just noticed and I thought that it was very sad that he didn't know his employees. I said to him "do you assume that everyone in uniform works for you?" I did not fight this issue with him as I knew I was moving her within 2 days.
All during this time, my wife was still ventilator dependent but she was weaning off the machine slowly, so I won't fault them for that.
We approached 4 weeks after my wife's surgery and I decided that it was time to move her to another hospital closer to home, near our doctors. Our surgeon agreed as his job was done and the stomach was fine. I also found out after the fact that at the time I was moving her, a patient died from sepsis 3 days after the same surgery. I also found out from this same source that the rate of infectious disease in this hospital was so high, it is out of control and they can not get it under control.
HOSPITAL #2
I made arrangements with our Pulmonologist to have her moved to his hospital and he accepted her as the Attending Physician. His hospital accepted this new challenge and the nursing care that my wife received was outstanding. No one made her weight an issue, no one discriminated. They worked together as a team to get the job done with her care.
From talking to the nurses, I could sense that they did realize that my wife was neglected in hospital #1. Some of them said in informal conversation that she never should have gotten the decubitis ulcers. They said she was severely malnourished when she arrived, still had c-dif infection and was septic. Looking back, I remember a nurse in hospital #1 saying to me "she is so sick, she is so very, very sick". How? How could someone who was basically healthy get so sick in such a short period of time?
My wife was in hospital #2 for 4 months. The nursing care that she received was outstanding! I could not ask for better. She was treated as if she was a member of their own family. Looking back, I realize that they were giving her "comfort care". They were a small community hospital and the doctors didn't have the expertise to get her well. Everything to our attending physician was a battle. I feel that they were way in over their heads months ago and should have said something. A doctor has an obligation to help the patient seek the best medical treatment. The doctors in this hospital were reactive when something happened, but not proactive in preventing something else from happening. Unfortunately, from the time she went there, it was their goal to focus on the decubitis ulcers, and not the weaning so she became very ventilator dependent.
While in this hospital, my wife was never taken out of bed. They said she couldn't sit on her butt because of the ulcers and were not equipped to get her out of bed. I explained to them that we were in the position to get them anything they needed to get the job done but that didn't matter to them. I remember a nurses aide saying something to the effect that "when she loses another 100 pounds, we will be able to get her out of bed". How stupid, now I know why this girl is an aide, and not a nurse.
My wife's ulcers got worse and she was getting one infection after another. She was on so many antibiotics and was so malnourished that she went into full renal failure. It has been determined that she will need dialysis for the rest of her life. Approximately 4 weeks after being admitted to this hospital, her feeding tube came out and they tried to put it in themselves. I was not comfortable with this as they were not familiar with the new "pouch" and they told me that they called our original surgeon. Soon after, they told me that she had internal bleeding. I told them that they probably hit something when they were trying to insert the tube, as they are unfamiliar with gastric bypass surgery but according to them, that was not the case. What pissed me off even more was that I had a friend who was a cardio thoracic surgeon who has performed this surgery during his career, who worked in this hospital. They would not call him for a consult! I guess their ego got in the way.
They took her back to hospital #1 for a day to try and get the tube back in as this is where it was placed originally. The radiologist was the kindest, most wonderful man and understood my concern for her. He could not get the tube in because she started to heal internally and she was sent back to hospital #2. Her gastroenterologist decided to let her start eating so she can nourish herself, which I though was odd. The food they gave her was pureed and my wife hated it, who wouldn't. My sister in law started to cook and we would bring food in, which my wife loved! I made sure I was always there to feed her. It was much more personal.
The question that I posed to the gastroenterologist was this: "my wife is sedated during the day with morphine when her dressings have to be changed as decubitis ulcers, especially hers, which are 3 and 4 inches deep, are very painful. Her new "pouch" at this point will only hold 2-3 ounces of food, which is not a lot. She sleeps all of the time, is sick with infection and does not feel like eating. HOW THE HELL DO YOU EXPECT HER TO EAT AND NOURISH HERSELF!!!!!!!!!!!!!!!!!!!!!". Well, 6 weeks later, very malnourished, and in renal failure, we went back to hospital #1 and the feeding tube was finally placed successfully. Unfortunately, they were a day late and a dollar short. Let me also say that this gastro group displayed professional misconduct when they breached patient confidentiality against my wife in a public place in the hospital, and I overheard it. I guess this answers why my wife became so malnourished, How good were they anyway? Can you imagine being in a public place in a hospital, hearing by a group of doctors that your wife was going to die?
My frustration started to build and I knew I had to do something. I was at constant odds with the attending physician and during a meeting one day, he said to me "why do you think you wife has decubitis ulcers?" and my response was NEGLECT! He stated "that is not true, you wife is heavy and she would have gotten them anyway". I stated to him that he was not at hospital #1 with me and never to NEGATE what I am saying again. He told me that if I could find another facility, he would approve that. He stated that he was doing the best he could do. He stated that "after all, I was willing to accept her when you brought her here because I felt I had an obligation; I was her doctor and was part of the surgery decision; you probably won't find another physician to accept her". I stated to him that he did have an obligation to us. He cleared her for surgery without even doing a blood gas, knowing she had a breathing problem!!!
HOSPITAL #3
My sister did some research and found a wonderful doctor who works in a hospital that specializes and supports obesity surgery. I wish I would have known him months ago, but I cannot look back. My wife was moved there and the first thing I noticed was that the nursing care was as wonderful as the care in hospital #2, but the SICU consisted of surgeons, residents, and physician assistants who all ran the unit. They were a proactive and innovative team who also took interest in the patients families. After hearing what I have gone through all of these months, they said that I would definitely add value to her recovery and my knowledge of the situation would definitely help them. This hospital specializes in critical care and I was told that they have had patients in worse condition than my wife.
On May 30th, 2001, we were at the point where she was finally getting better, her ulcers were getting better - due to a machine that they hooked up to them to stimulate blood flow and tissue growth. We were going to plan a family meeting with the doctors to determine a plan for rehabilitation; how we can all help her through this. She still had 2 serious infections but was responding well to antibiotics.
On the afternoon of this day, my wife was receiving her dialysis treatment and all of a sudden, she went into distress. Her blood pressure dropped and dialysis was haulted immediately. Within a few hours, it was determined that the lining of her "old" stomach started to hemorrhage and the pressure of the blood ripped her staples open causing her to bleed profusely from her nose, mouth, and feeding tube entry. While she was not conscious, a wonderful resident stayed with her all day and constantly pumped blood into her for about 4 hours. They were waiting for the surgeon to get to the hospital to do emergency.
When the surgeon arrived, he stated that she could die any time, which I was told earlier in the day. I went to my wife, while she was bleeding profusely and let her know that it was ok to let go; she fought a long battle and I didn't want her to fight anymore if she couldn't. She was so tired. I said goodbye to her and told the surgeon that it was in God's hands. The surgeon told me that if we didn't do the surgery, she would die; and if we did do the surgery, there was a very strong chance that she would also die. It was my decision. How does a person make a decision like that? I told him that I had to take the chance, and give her this last chance to fight. He agreed.
She went into surgery about 10:30pm and I laid on a stretcher in the hallway which is where I was all day. The doctors would not let me leave the unit as she was not expected to make it. All I did was cry all night, I couldn't stop. People from all over were so nice to me, they were so kind. The doctor came out at 2:30am, grinning from ear to ear. I saw him down the other end of the hallway and he said "SHE MADE IT". I knew my girl was a fighter and she wasn't ready to leave me yet. The doctor said that she did die on the table, and came back! He could not believe it! He also told me that he had to give her 14 pints of blood!!
A few days after the surgery, my wife was not waking up that easily. They did a CT Scan and EEG test and it was determined that she had suffered a severe stroke during the trauma on May 30th.. She is paralyzed on her right side and was left unable to move her mouth properly. They said that when you have a stroke on the left part of the brain, it affects the right side, and all of the speech skills and comprehension will be gone. The Neurologist was so kind and compassionate and he stated that basically she would be infantile, and will remain in this state. He stated that she will recognize voices but would never be able to comprehend anything we say. I had a very hard time dealing with this.
Well, 3 days later, I was in her room with her and she showed signs of understanding commands. I could not believe it. She did certain things that made us believe that she was aware of her surroundings, although the paralysis remains the same for now. I spoke to someone who is in a support group that I belong too and he stated to me that 2 weeks is not long enough to determine if someone will recover from a stroke. I decided to monitor her each day and give her my own tests to see what she understands and what she doesn't. My wife will always respond better to a family member than she will a health care member.
***This is where my story ends as of June 10, 2001. Please go to my update page for the continuation, as this story will be updated every Sunday evening***
