A Collection of Problems with the US Health Care System

Performing Artist. New Jersey. Statement 10202.

Categories: Patient Statements
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State:: NJ

Occupation:: Performing Artist

My mother was admitted into the hospital on Jan 1, 2009, for cellulitus in her left foot, had a foot ulcer, and to undergo IV antibiotics. Her foot doctor who diagnosed the cellulitus, determined when he visited her at home on Dec. 31, 2008, that she caught the cellulitus where she underwent aquatherapy as an out-patient during the Fall of 2008. An MRI showed that the bone was unaffected, so after five days in hospital, she continued the 2-week course of antibiotics and was told to stay off her foot. For someone who is used to walking every day and doing stairs, despite using a walker, this set her back. She then contracted pneumonia in the bottom of her left lung, and C-diff. On Jan 14, after 8 days at, she was sent back to the hospital with a temp of 102 and difficulty breathing.

Mom always ate well and never had a problem swallowing. That day, Jan.14, She was having difficulty coughing up mucous as it was quite deep. Her EKG was normal. I helped her with lunch, and she ate without difficulty. Later I left to get some rest, and an aide fed her 6 pm dinner, when she coughed whilst eating, to get rid of the mucous. She aspirated her food and the pneumonia spread to both lungs. She was sent to ICU, was intubated and put on a ventilator. In ICU, she was extubated twice, as she was able to breathe on her own for 14 hours, but there was a lot of mucous, and after a week it was determined that she needed a tracheotomy, PICC line, and feeding tube.

After 10 days in ICU, Mom was transferred to a step-down unit, where she was rapidly recovering. Her PICC line was removed, and she was transferred to a specialty unit on Jan 28, 2009, for vent-weaning and PT.

Mom had never smoked, drank, nor even had coffee. She ate a good basic diet, was able to eat anything she wanted without any swallowing difficulty whatsoever. A classical dancer, yoga teacher, and lap-swimmer, Mom always exercised. She performed as a dancer in public, whilst holding a marketing sales job, until the age of 75. At 77, she advised a dance book author. Her only previous hospitalizations were in 02 and 05 each for a hip fracture. Prior to that she had never been hospitalized except to give birth to me. She went to the chiropractor every week through Dec. 2008. She never suffered any form of dementia, nor any hearing loss. She had no cognition issues, maintained a feisty disposition, and ran her property for over 40 years on her own, with help only from me. Highly intelligent, Mom’s mind was always lucid, her memory sharp, her speech clear. Her book collection, which includes very high-minded texts on philosophy, mythology and spirituality, to vouch for her high intellect. Even whilst in the ICU, Mom would listen alertly and attentively to classical music she used for dance, and she often would do her arm dance moves to it in her bed. Her spirit and mind were clearly intact as well as her ever-present grace of movement.

From Jan. 28, Mom was doing very well vent weaning, as she had never had a previous respiratory problem. She was able to breathe upwards of 40 hours straight on the trach collar and completely off the vent, whilst maintaining her chipper and upbeat disposition. Highly cognitive and mobile, Mom was receiving physical therapy and was getting out of bed and getting ready to walk again. We often spent hours together in her room reading from her precious art books and discussing the state of the world, and what was happening at home. These were lovely visits, despite her being in a hospital. We looked forward eagerly to Mom coming home.

A week after entering the facility, on Feb 4, her trach had problems being suctioned, so it was changed to a smaller size. Her tube had air leaks, and on Feb 7, I noticed her voice was slightly raspy. I was with her until 10pm that evening watching a movie and she was speaking and moving normally as usual, as even with the trach, I could read her lips quite easily. I had arranged to have Mom’s hair and nails done that week as a gift, since she could not eat her Valentine chocolates.

***At midnight (Feb 7 into Feb. 8), after I left, her trach was again changed, without any physician’s order to an even smaller size. I called to check on Mom at 6am on Feb 8, and again at 8am, and all was well. Two hours later, whilst I was in church, I received a terrible message that Mom had an “event.” Her inappropriately small trach slipped out of her airway and she lost oxygen for several minutes, causing a hypoxic episode with PEA. Remember it was downsized twice in one week, into a fresh stoma, only two weeks following surgery.

***I later found out that this was caused when the RN & CNA turned Mom that morning, and did not pay attention to the smaller size of the trach, so it slipped out during turning. The nurses then negligently left her side, with Mom receiving no oxygen!!

***The staff purposely failed to report this nurse issue to me. I only found this out in April AFTER Mom was out of the unit and AFTER I retrieved her medical records, when I had an RN not affiliated with either facility read the records and interpret them for me. Due to this covert action, I spent several months in further agony speculating on how this happened.

The respiratory staff immediately got 100% oxygen into Mom, and her heart rate was normal. She was conscious. She was then improperly bag-breathed, in which the air went into her face subcutaneously, and when I saw her 90 minutes later, her face was puffed all on one side, and she was unconscious and in a coma. She had never been unconscious before, and I had never seen her like that!

I stayed by her side, horrified and shocked, as the charge nurse examined her. Mom could see, because her pupils responded to the penlight when the nurse lifted Mom’s eyelids to shine the light into her eyes.

Mom could definitely feel pain and I was witness to her pain and suffering. About a day after the trach event, she started to come to more and more, and was quite wide awake and frightened and very upset at not being able to verbally express herself, as she has always been very eloquent in her words and highly intellectual. Mom winced and grimaced visibly in extreme pain, and looked pleadingly at me for help, and I felt powerless to help her. I asked her: “Can you hear me?” She nodded with a grimace. I asked her “Do you love me?” Again she nodded with a grimace. At one horrifying moment, she looked pleadingly at me and was trying to cry out, before she fell back into a deep coma. She was VISIBLY in pain & suffering and in extreme agony with not being able to speak nor to move, and she NEVER SPOKE AGAIN! This is unacceptable!

It would have been appropriate to have an EENT change her trach to begin with, rather than after the fact of her sustaining such a devastating injury. When I refused to consent to send Mom back to the original hospital, I requested that an EENT come to where my mother was to take care of it, and was promptly told that the facility did not do that, and that no EENT “had clearance” to come there. Had Mom’s trach been properly changed by an EENT and not by an RT who acted independently, that horrible medical event would no doubt have been avoided, Mom would then have completed her rehab and vent-weaning (which was going very well), and been home by late Feb./early March – and we would not have had the enormous pressure and difficulty we had been faced with.

After waiting two days for an available bed, Mother was sent back to the hospital on Tues. (Feb.10, 09) for the trach to be properly changed by the EENT doctor who did the original procedure. She was also given a CAT scan (which was reported to be “OK for her age”), and an EEG (with reported “abnormal activity” – which could have been induced by the psychiatric drug, or bed electricity, or coughing/suctioning activity etc.) She later underwent another EEG at Kindred (June 12), which showed NO signs of seizure activity.

Due to the negligence at where she was before, Mom was in a deep coma, and prior to discharge, the wound nurse examined her, and showed me the large red mark on her back. This was only two days following the trach accident, and right when her PT was erroneously halted. She then warned me, “You need to watch this.” I was not familiar with such things, and I didn’t know what she meant, but it was hardly my job to make sure that a bedsore was prevented! Their staff of “professionals” are supposed to watch and prevent such things! That is their job, and there is NEVER ANY EXCUSE for a bedsore, especially a 13cm sore on a five-foot-tall woman!

From Tuesday – Friday, Feb. 10-13, at HUMC, Mom received a much larger trach from the doctor, which is what should have been done in the first place. She came in and out of consciousness, and when her eyes were open, she would grimace in pain and suffering and confusion and fear over what had happened to her. Mom was always very facially expressive, and I could plainly see the fear and pain in her eyes, and I felt useless to help ease her pain. This was traumatic for BOTH of us!

Mom was diagnosed with anoxic encephalopathy, caused by these medical errors.

At HUMC, she had a EEG and CAT scan, ordered by a very abusive neurologist, who had no bedside manner whatsoever and who was incredibly rude to me despite the post-traumatic state that I was (and remain) in. The doctor erroneously gave Mom huge does of Depacon, an epileptic drug, claiming it would “wake her up,” but instead had the opposite effect, and which later compromised Mom’s kidneys, leading to her passing.

This doctor originally saw Mom at the previous facility, both before and during the following three days at the hospital. Mom was sent back to the previous facility on Friday, Feb. 13. That day, I pressed the doctor as to therapies, treatments etc would help Mom’s injury. The response was, “there’s nothing, now I’m too busy to talk to you.” This was clearly negligence, abuse, and the facility’s mishandling of Mom’s case, especially on the part of the doctor. Mom continued in a coma for three weeks. I ordered the epilepsy drug DC’d, and I fired the doctor.

This doctor had a particularly abusive bedside manner, and behaved carelessly and inappropriatly in her handling of my Mother’s case. At both the facility and the hospital, her rudeness and abusive manner towards myself were inexcusable. On Feb. 17, I had her removed from my mother’s case. Later that day, she appeared at the facility, and was promptly told by Mom’s attending physician, that her services would no longer be needed. Without seeing my Mom, she then proceeded to write notes in Mom’s chart, and then charged for a “service.” I refuse to pay for her fraudulent actions and inappropriate treatment of both my Mother and myself. I reported this to Medicare, who stated that this is Medicare Fraud, and an investigation is underway.

Back at the facility, Mom was even further negligently treated. Before this incident, I had become an integral component of Mom’s PT, as was encouraged early on by the PT staff to bring her dance music and work with her, which I did every day, making careful appointments with PT to be there with her music at the times they would come to her room. On Feb. 13, I asked the head of PT when Mom would resume therapy. PT refused to work with her. The facility also failed to give Mom a pressure-relief inflatable mattress. This was clearly a huge mistake, as brain injury recovery requires that the patient receive stimulation and movement, regardless of age, in order to prevent pressure sores.

***Within three weeks of the trach event, Mom developed a 13-cm Stage-Four pressure sore, which was debrided at the facility on March 1, 2009, by a plastic surgeon. This horrible bedsore happened due to negligent care and lack of PT. Mom had NO such wound of any kind upon admission!
As a dancer who moved with grace and beauty flexibility into her late 70’s, this was devastating. Mom was also fully able to hear and comprehend words, as I would often speak to her normally, and she would react facially appropriately to my words, and would also react to music. She clearly retained ALL her faculties following the accident, but was ROBBED of her ability to communicate and to move on her own. As one who knows her better than anyone else, I know this to be true. Following this horrifying preventable event, Mom’s graceful dancer’s arms were often contorted into decorticate positions.

Mom should have been referred to a Traumatic Brain Injury facility, such as Helen Hayes or Kessler, but the facility never bothered to mention nor consider this. It was only after I began doing research into TBI and registering Mom for the NJ TBI Fund, that I learned of such facilities. It is not my job to know this, the facility’s staff supposedly are “professionals” and should have done this. Upon inquiry, in May, the brain injury specialists at Helen Hayes told me that Mom would have gotten PT there even in coma, regardless of her age, and how important PT is to prevent bedsores and other complications. By the time I had done sufficient research, it was already three months post-injury, and both Helen Hayes and Kessler told me that it was already too late for her to begin treatment, and that Mom should have been transferred to a TBI facility immediately upon injury! Had Mom been properly transferred to such a facility, she would have recovered more of her functions and would not have contracted the bedsore. By May, I registered Mom for the NJ TBI Fund, and inquired into Helen Hayes and Kessler, both who specialize in brain injury. The brain injury specialists at both had said that Mom should have been brought in immediately post-injury, to receive PT, stimulation and proper therapy to avoid bedsores, but three months post-injury was already too late, as her bedsore was at Stage 4, due to the facility’s negligence.

This was outright negligence and ignorance. Mom should have been seen by a neurologist who specializes in TBI, however, her doctor is the ONLY neurologist listed on staff at this facility. Ironically, the facility lists TBI as one of its of treatment specialties – however they caused Mom’s TBI, and then neglected to properly treat the injury that they caused.

Following her return to the facility from the hospital on Feb.12, Mom received two units of blood within one week, as her hemoglobin level dropped to about 6. Upon her admittance to the facility on Jan 28, I had brought her vitamin supplements to be sure that she continued to receive them, as her regular MD for years had prescribed iron 2x/day for her. The facility neglected to give her the iron, because they claimed they “forgot,” so Mom became anemic.

At the facility, Mom was protein-deprived and mal-nourished. She was not given adequate protein supplements, which also dropped her albumin levels dangerously and she became dehydrated. The facility’s “nutritionist” is useless and clearly knows nothing about proper nutrition. To counter this condition, the staff doctor erroneously chose to give her large IV fluid bags, which ballooned her weight from her normal 120 pounds on her 5’1” frame to 150 pounds though she was tube-fed, and swelled her limbs to the point of weeping profusely and gushing fluid through split skin, causing further infections and more breathing difficulties. I had to instruct the doctors to turn off these IV bags. They clearly did not properly balance her chemistry. This made her more prone to infections, and the added weight strained her heart and made it difficult to wean her off the vent. Her limbs continued to weep, and to be edeamic due to lack of movement.

I quit my twenty-year career to care for Mom, learned coma stimulation and became her ONLY therapist. I brought in holistic treatments and nutrition, which helped Mom much more than anything the facility did. Mom gradually opened her eyes and became more responsive. She was facially expressive and was aware of what was going on around her. She was able to feel pain, and demonstrated such when moved in certain ways. She felt the pain of her bedsore. She was able to hear, as she responded well to my voice and my words to her, but Mom never spoke again nor barely moved on her own. She could not respond, and I could see how frustrating this was for her. She could no longer lift her arms, hold my hand nor express herself as she always had. This is Robbery! This was devastating for both of us, who for many years danced professionally together.

Mom’ huge pressure sore should have received a wound VAC at the facility, which she later received at another, but was not offered one, as the original facility do not have any. Had I known of such a thing as a wound VAC, I would have demanded one for her, but it is not my job to know this. As the facility’s finances report substantial profit increases over last year, they can certainly afford wound VAC’s, and should have them. Their wound care is substandard and outdated, as reported in their other facilities.

I was deeply traumatized and in shock from seeing my Mother in a coma, as she had never been in that state before, so I cannot recall names of specific nurses from that day. The facility refuses to name the nurse and CNA responsible for the turning incident, despite that legal counsel has repeatedly instructed the facility to do so.

Following Mom’s event, the entire staff was walking around looking very guiltily at me, and this didn’t register with me immediately, as I was not experienced in these matters nor medically trained. I just was filled with hope and prayer and belief in Mom’s strength of constitution and character to pull thru this, and how was I going to help her.

That morning of Feb. 8, I had a painful exchange with the charge nurse from the night before. I asked him if Mom was going to wake up, and he suddenly pulled a very guilty and sheepish expression and said, thru a contorted face, “We hope.” Later that day, the day charge nurse, was also acting and looking guilty, and offered to give me sandwiches from the staff room, as I had not eaten all day, whilst was waiting for Mom to wake up/be transferred to the hospital for a proper trach change. I refused to leave Mom’s side, and was in terrible mental anguish from all this. Later, when I finally went home to try and rest, I could not sleep and called the nurses’ station in the middle of the night to ask if Mom had awakened yet. Mom’s night nurse simply said to me, “Pray.” Very guilty indeed.

The attending pulminologist at the facility at the time, informed me that Mom’s trach accident was “not due to her physiology (or her capacity to breathe), but due to technical troubles with the trach, and that the trach was mishandled (negligently).” This clearly indicates that the RT acted alone and is at fault for the trach accident. He did not consult with a physician nor with a senior nurse prior to his improper changing of the trach. He acted independently and without physician’s order to downsize this trach. He is clearly responsible, along with the nurse and CNA who carelessly turned Mom without attention to her improperly downsized.

I only got jumbled answers from facility staff and guilty blank looks whenever I asked for explanations. I never received any straight answers. When I pressed for how long Mom lost oxygen, I was told it was max 5 minutes, although it was considerably longer, closer to 15 minutes, long enough to damage her brain permanently. A better RT, revealed to me that Mom’s vent alarm was repeatedly sounding, and it took all that time for staff to get to her. They did not act quickly enough, and admitted it. The facility clearly and purposely concealed this information to avoid justified legal action, and blatantly lied, obstructing justice and withholding evidence.

At the facility, the original RT never gave me a straight answer when I questioned him about the events of the night of Feb. 7-8 when he changed the trach. He spoke in circles and made no sense and was obviously covering his tracks. He made a very bad judgment call, and he knew it His accent made him difficult to understand, and no matter how many times I asked him to clarify, he never cooperated. He is clearly guilty, and should lose his license and be deported back to Spain.

When I questioned an RT at the hospital about it, she said plainly that a such a small trach should only be used for someone who was nearly fully weaned off vent, and then not by itself but used in conjunction with either an oxygen placement in the nose or other form of resp. support. Further, the stoma surrounding the trach was not closed enough to keep such a small trac in place when going suddenly from a 6. Several RT’s concurred that the original RT’s actions were clearly inappropriate.

Following this event, the care that Mom received at the facility continued to be negligent, and this was even more difficult as she could no longer speak for herself nor express her needs on her own. In a vegetative state due to the brain injury, Mom was completely at the mercy of these often careless and negligent staff. For example, occasion, when my Mom had her second bout of C-diff and diahrrea caused by antibiotics, we had to wait for over TWO HOURS for Mom’s diaper to be changed, which caused her to get e-coli in her UT, a serious UTO infection, on top of the C-diff. I repeatedly asked the nurse to have her changed, and the excuses given were that the aides were “too busy with other patients,” short-staffed etc. Unacceptable!

Another time, a male nurse assigned to her was not agreeable to come to her aid when I saw she needed help and I asked him. He got off-handed and complained to me that I was “bothering him too much.” Then he should not be a nurse!

One day in early March, Mom was put into a sitting-up position, which she could not handle at that point, and she was slumping over and barely able to get oxygen form this slump-over, even on the vent. The nurse assigned to her that day had not worked with her before, and I saw that and hit the ceiling! Remember, Mom could no longer communicate her needs, and she had always been clear verbally, until the trach event. I notified the charge nurse (same one who had been on duty during the trach accident), and demanded a different nurse be assigned to Mom immediately. I told them that if this happened again, that I would remove her from there myself and take her home to receive care, regardless of how ill she was.

These sorts of things went on regularly, and the doctors who came in to make rounds often did not communicate well with each other and the care was never consistent. There were virtually NO doctors on staff full-time, except a “house doctor” or two, and they were not the most helpful nor best informed.

On top of all this, as I tried to attend to and manage Mom’s care, the facility’s admin staff bullied and intimidated me relentlessly about papers and care management etc, chasing me down the halls when I was trying to speak with doctors and get information.

On March 18, 2009, Mom was transferred from the facility into another unit but in the same building for vent weaning and rehab, where she suffered additional horrors. In June, Mom was admitted into yet another hospital, where her care was much better and more comprehensive. This hospital incorporated the holistic nutrition that I brought in, and did much better at balancing her chemistry, but the damage done by the facility’s negligence was clearly done. I wish Mom had never been at the facility, and have advised everyone I know not to admit loved ones there!

The original RT from the facility also was working nights at Kindred. I found this out in July one evening, when I stayed late with Mom, to the end of visiting hours (8pm), when I ran into him in the elevator as I was leaving. He was just coming in to begin his night shift, and we said a cordial hello. But then I realized how awful that he is working there (since he admitted to being a part-time per diem at the facility, thru an agency, and not a regular employee). I was suddenly very angry, and I raced back upstairs, and reported to the charge nurse and head of RT that under no circumstances was this other RT to be assigned to care for Mom. The other RT and I got into a brief heated conversation, and I informed him that the matter was being investigated. He never was assigned to Mom there, and was told to work the other side of the floor, away from her.

At this hospital, an older more experienced RT who came on board in mid-July, upon my telling of Mom’s story, said gravely and darkly to me: “Things happen at that facility.” He had heard about lots of mistakes and negligence thru the rounds of RT work.

Mom was definitely sensitive to the bedsore pain and to pain in general following the accident with the trach. Every time I would exercise her, as I was asked to do by PT staff, Mom would often wince in pain when turned a certain way, or when her bedsore area was worked on. She clearly was sensitive to touch and stimulation, as I learned comastim and would use several different stimuli on her such as heat, cold, wet, strong tastes, scents etc, all of which she reacted to strongly and was often awake , just non-verbal and not moving.

Despite the new hospital’s very good care, the errors Mom suffered at the facility proved permanent. Mom passed away on Aug. 6, 2009. Her official COD was complications for SEPSIS along with renal failure and hypoxia/anoxia. All Mom wanted was to come home, and this was stolen from her. I lost Mom twice: at her brain injury, and again at her passing. Her passing her been ruled a Wrongful Death, and legal action has been taken.

I am under doctors’ care for depression, anxiety, and sever PTSD, due to this horror and to the abuse and intimidation we were both subjected to. My blood pressure continues to be a problem and I am taking therapy — all at my own expense, as I have not been working since I quit my career to care for Mom, and have no health insurance. MITSS.org defines my condition thus: “Medically Induced Trauma is an unexpected outcome that occurs during medical care that negatively impacts the emotional well-being of the patient/.family.” My therapist feels that I have been so severely traumatized by what has happened to Mom that I may never fully recover. So both our lives have been wrecked.
My Mom, my only family and Best Friend, Vera Links Eliscu, a fourth-generation law-abiding tax-paying American, must not have died in vain.