February 28 I talked to Horizons Blue Cross Blue Shield of New Jersey yesterday about a claim that they denied. We live in Florida, but due to my place of employment, we have to deal with NJ. I asked the representative how much they were going to cover for Michael's nutrition. She said that they were not going to cover any of it. This will cost us $540 a month that we cannot afford. Since Michael does not qualify for SSI or Medicaid or any other program due to household income exceeding $2400 a month, I guess I will have to quit my job after 21 years, and reduce the household income. Before I make any rash decisions, I will talk to our catastrophic case manager at BCBS and see if they are going to be decent or not. Due to our insurance change, we are not covered on some things and have to pay out of pocket which will take it's toll. Bastards. February 27 Michael is doing well. Nothing new to report. We are still looking into therapies for him. We have not heard back from the Elk Lodge therapist, so the search continues. He receives therapy twice a week at Silver Sands, including standing. He also receives range of motion and stands 6 days a week at home. February 23 It has been about 2 months since Michael's last stem cell injection. We have seen only minor improvements, but improvements just the same. Tomorrow he will be competing in the Special Olympics at school. I think he is signed up for a race. This breaks my heart more than you can imagine. FYI February 22 Michael is doing well. I wish he would sleep a little more, but other than that, all is`well. February 17-19 Michael is doing well. No major improvements with him, but we are still hopeful. Weekends are the time to catch up on the things that we don't have time for during the week. In addition, it is the time to work on the many projects to make life a little easier or that help Michael on his road to recovery. There is always a project going on. Yesterday was President's Day, so Michael did not have school. Brooke spent the day with him while we went to work. February 16 The eyes tell the story. Looking at someone who has a brain injury, they may look normal until you look into their eyes. Michael is no exception. Sometimes, his eyes are dilated with no signs of life. Other times, his eyes are bright and full of life. I rely on his eyes to let me know what is going on inside. One of the things I had noticed for awhile was that sometimes his eyes would look to the right and just kind of bounce. He no longer does that. I take this as a good thing. One of our benefits with Blue Cross Blue Shield is that we have a group of doctors and therapists that we can talk to about our situation. One of the doctors made contact with me to inform me that we have options when it comes to Michael. One of the options is that when we feel it is time to let go, we can call in Hospice. We can withhold his food and water when we just can't go on. So, if we get too tired, we can just kill Michael and get on with life. That will never be an option as long as I am around. February 14 Michael is doing well and sleeping more these days. He is asleep by 10:00 and up by 5:30. Thanks to some very kind people, the Elks Lodge will be helping us out with some occupational therapy. It is one of the many services that they provide. I do not know the schedule yet, but will find out more soon. February 12 Nothing exciting around here. It seems that Michael never sleeps anymore since the stem cells. I check on him several times through the night and Saturday he was still awake at 2:30 in the AM. I whine about getting 5 hours of sleep at night and here is Michael cruising through the days with much less. I gave him a sleep aid last night that normally would not do anything, but he was out like a light at 9:30. He slept through the night and did not wake until 5:00 AM. We brought him to a park yesterday, but he did not seem to enjoy it; probably just tired. He caught his second wind after his bath and spent quite a while being very vocal. February 10 This is an article that appeared in the Northwest Florida Daily News last Sunday for those that missed it: Father, son undertake journey for therapy Pair flew to China for controversial stem cell treatment WENDY VICTORA Northwest Florida Daily News, Fort Walton Beach FORT WALTON BEACH - In a corner of his dad's front room, Michael Mobley slumps in a blue recliner. A powder-blue diaper peeks above the waistband of the teenager's sweatpants. His head droops forward and to the right. At regular intervals, the 15-year-old jerks it up and around, making fleeting eye contact with others. That may be a sign that the therapy Michael traveled 9,000 miles to receive is starting to work. His father, David Mobley, took Michael all the way to China, where doctors repeatedly injected stem cells into his spine and bloodstream. David is afraid to hope his son will heal. The Fort Walton Beach man is equally afraid not to. "Believe me, when you're in this condition, you look for any change you can," he said. Michael was 14 when he drowned and was resuscitated after becoming intoxicated at a beach party with other teens. His brain had been starved of oxygen from anywhere between 10 and 30 minutes, which caused extensive brain damage. Since that day in June 2005, he has been in a persistent vegetative state, much like Terry Schiavo was, his father said. That's what led him to look into stem cell therapy, which he learned about online through a support group for parents of brain-injured children. "Parents have to be careful. It's your child. You'll do anything. People will take advantage of you," said David, who added that there are a number of alternative therapies available. Of those, stem cell therapy offered the most hope. "It's not a magic bullet. On the other hand, it's not black magic, either," he said. Suspending disbelief Although stem cell therapies are used today in the United States, they are limited to the treatment of specific diseases such as leukemia. Technically, a bone marrow transplant is a stem cell therapy because the patient receives healthy bone marrow stem cells from a donor to replace abnormal ones. But for neurological injuries like Michael's, there are no stem cell therapies available. Nor is there hard evidence that the therapy will work. "Whoever is selling you this therapy is asking you to suspend disbelief," said Charles Murtaugh, assistant professor of human genetics at the University of Utah. He is researching stem cell therapy in the treatment of diabetes. Murtaugh said much of the stem cell research in the United States is being conducted on animals. Research involving humans tends to focus on identifying specific stem cells and how they might be used in treating a particular disease. He said that it is not clear whether stem cells could be used to help repair brain or spinal cord injuries. "There is evidence that some cells from cord blood could do something like this, but the evidence is ambivalent," Murtaugh said. "If it was true, I think there'd be a lot more people working on it," he added. "I haven't seen a lot of movement in that field." Journey for hope In doing Internet research, David Mobley found stem cell therapy available for Michael in only four countries: China, Costa Rica, Mexico and the Dominican Republic. Of those, he chose China because the $20,000 fee included a six-week hospital stay, which included a mix of eastern and western medicine. David withdrew money from his 401(k), and in late November he and his wife of two years, Dana, flew a commercial airline to China with Michael. They moved Michael - a "152-pound infant" - in and out of airline seats and wheelchairs for the 30-hour trip. Over the six-week stay, doctors injected four doses of umbilical cord stem cells into Michael's spinal cord, with a fifth introduced intravenously. Doctors told them that sometime in the next three months, the immature stem cells introduced into Michael's system should cause him to "wake up" and "do something." "What I'm personally hoping for is in the next couple of months (that he'll be able) to give me a yes or no," David said. "(The) long-term goal is that he'll come back, 'Where have I been for a year-and-a-half?' " his father added wistfully. Quality of life It is still easier to list the things Michael cannot do than the things he can. Like Schiavo, he has a feeding tube because he can swallow nothing, even his own saliva. He can feel all of his extremities but moves none of them voluntarily. Michael's eyes do not track movements or colors and, when his father plays music Michael downloaded before the accident, the boy has no response. He laughs randomly, and occasionally - heartbreakingly - cries. So far, the only definite improvement they have seen is that a skin condition that plagued Michael since the brain injury has all but disappeared. Other signs of progress have been more difficult to measure. He hasn't slept through the night since the accident, which means his father hasn't, either. When Michael wakes up, the baby monitor in his room alerts his father. His diaper may need changing. He may need his position shifted. He may just be awake. He can't tell his father. The brain injury appears to have permanently altered his body clock, his dad said. And every time Michael wakes up, David does too. "It would be pretty bad if he died on my watch," said David. "Right now, it's just maintaining him physically until the cognitive part kicks in." Another day For now, David just focuses on the moment that is right in front of him - on surviving that one, and the one immediately following. Michael goes to Silver Sands School during the day and will attend until he is 22. Sometimes, David thinks about Terri Schiavo, about how her life ended. He and his son talked about that as well. "If you're asking me what he would have wanted, he would not have wanted this," David said. "But he does not have that choice." For now, David is focused on looking for evidence that the stem cell therapy is working, for proof that he has gotten even the smallest fraction of his son back. "All we gotta do is make it through another day, another day, another day. I can't look way into the future," he said. "If I look too far, I might see the truth, you know, and I don't know if I want to." February 8 Michael had a little problem going to sleep last night; he was too busy laughing. Once he did drift off, he slept through the night. His stomach was growling yesterday evening as if he was hungry; this is something new. Hopefully, this is a sign that the healing process is taking place; it has to start somewhere. February 7 One of the hardest sights for anyone is a wheelchair in their house. It is even harder for a parent. It is unbearable to think that the chair will be needed forever. However, life would be impossible without one. It is time for a new one for Michael. We have new insurance and it is one of the items that we requested. Another item is a ceiling lift to transfer him to his chair. We have improvised by installing a hoist from Harbor Freight tools ($79), but it is unsightly. We are also requesting a tilt table to replace the $100 inversion table that I converted and has been used for well over a year. Hopefully, we will not have to fight with Blue Cross Blue Shield to get the needed items. Requesting the equipment does not mean that I have given up on Michael improving; we just need thse things until he starts walking again. Wishful thinking? No, it's called faith. February 5 Michael did not sleep well last night. He was full of energy and very vocal until the wee hours of the morning. He seemed to be in a good mood, so I couldn't help but smile whenever I got up to check on him. His laugh is a little different over the past couple of days; it sounds more like a real Michael laugh. The little things. February 4, 2007 Michael is doing well. He still coughs occasionally, but it does not appear to be anything serious. I have been giving him aggressive range of motion and he is in his stander for 30 minutes everyday. We are going to try to find some therapists this week to help, because therapy is very important. The problem is that insurance only pays for 60 sessions in a calendar year and if he receives all three disciplines each day, five days a week, he will run out of therapies in a month. The therapies are: Physical Therapy (PT) - Concerned with helping the patient regain maximum functioning of body movement or preventing further deterioration of physical function of patient. Occupational Therapy (OT)- Concerned with helping the patient with activities of daily living (ADL) and with recovering functions which help them return to gainful employment and maximum independence. Speech Therapy (ST)- Concerned with helping the patient return to normal or alternative patterns of communication. Also concerned with helping the patient recover their swallowing capabilities. In addition to these therapies, many people use acupuncture and hyperbaric oxygen treatment with positive results. These are definitley not covered by insurance. No major changes in Michael yet, but it has only been about 5 weeks since his last stem cell injections. Basically for children with anoxic brain injuries , there are three general paths after the stem cells. 1) There is some immediate improvement after the first couple injections and the parents can not tell weather to relate that to the stem cells or the rehab. Usually they relate it to the rehab because the rehab they get here is usually more intense that what they were getting back at home. Then by the third or fourth week they start to notice some substantial improvements and then it continues for about 2 to 4 months afterwards. 2) The parents notice absolutely nothing while they are getting the treatment. The children are getting that same intense rehab that the other parents are crediting for the improvements they are seeing for their kids instead of the stem cells, but nothing is happening for them. They go home and wait. Then suddenly about a couple months later things start happening and they are happy. 3) Finally there are some patients who wait and wait and in the end do not get anything. But this is a small percentage. |
February 2007
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Coma and Persistent Vegetative State: An Exploration of Terms By Cheryl Arenella MD, MPH May, 2005 Many of us have heard through the media about the trials of Terri Schiavo and her family. Terri Schiavo was an unfortunate young woman who suffered a cardiac arrest many years ago with subsequent brain damage from lack of oxygen. She had been in a persistent vegetative state since then, and was maintained on tube feedings. We heard about the disagreements between her family and her husband as to what Terri would want in this situation. Unfortunately, her whole family has been torn apart by the conflict surrounding her husband’s decision, backed by the courts, to discontinue her tube feedings. Regardless of what opinions were expressed about the continuation or discontinuation of Terri Schiavo’s tube feedings, the emotions of those expressing their views ran high. But emotions can sometimes lead us astray, especially if the facts of a situation are distorted, misrepresented or not understood. Shedding light on areas that are poorly understood can only help inform our opinions and enable us to make more sound decisions for ourselves and those whose care has been entrusted to us. To that end, let us explore some of the terms we heard during the debate surrounding the care of Terri Schiavo. We will view a definition and description of “coma” as well as a “persistent vegetative state” (PVS), discuss the chances for recovery, and briefly look at the long term effects of these conditions. We will explore the possible role of hospice programs in caring for persons with coma or a PVS. The goal of the discussion is to provide a reasoned framework for making treatment decisions for persons suffering from coma or a PVS. With the information provided, perhaps the burden felt by those in decision-making roles will be greatly lessened. What is a coma? Coma is a state in which the cortex or higher brain areas of a person are damaged resulting in loss of consciousness, inability to be roused, and unresponsiveness to pain, sound, touch and light. If lower brain centers are damaged, a respirator may be required for the person to breathe. The damage may be reversible or irreversible. What causes a coma? There are various causes of coma, including: * Stroke caused by bleeding or clots * Trauma to the brain * Masses or tumors in the brain * Metabolic imbalances such as high or low blood sugar, high blood calcium, or abnormalities stemming from liver or kidney failure * Lack of oxygen to the brain for prolonged periods of time, such as when a person suffers cardio-respiratory arrest (heartbeat and breathing stops) * Hypothermia, when the body’s temperature falls dangerously low * A post-seizure state * Toxic effects of drugs or alcohol What is a Persistent Vegetative State (PVS)? A vegetative state exists when a person is able to be awake, but is totally unaware. A person in a vegetative state can no longer “think,” reason, relate meaningfully with his/her environment, recognize the presence of loved ones, or “feel” emotions or discomfort. The higher levels of the brain are no longer functional. A vegetative state is called “persistent” if it lasts for more than four weeks. What does a person in a PVS “look like”? Like a person in a coma, a person in a PVS is bed or chair-bound, is totally dependent for all care needs, cannot eat or drink, cannot speak, and is incontinent of urine and bowels. Unlike a person in a coma, a person in a PVS has sleep-wake cycles or periods when he/she is awake and periods when he/she is asleep, can cough, sneeze, scratch and even cry or smile at times. The person may at times move his/her arms or legs. A person in a PVS may have automatic reactions to touch (drawing the body part away), sound (turning the head toward) and light (blinking the eyelids). The person’s eyes move and stop randomly. If the person’s gaze happens to momentarily stop in the direction of someone at the bedside, that person might misinterpret this as “He/she is looking at me!” These behaviors can be disconcerting and confusing to an onlooker, especially a loved one, who may misinterpret them as an indication that the person in a PVS has awareness but is unable to communicate this to those around them. However, all of these are automatic behaviors that do not require any functioning of the thinking part of the brain. What causes a PVS? Coma can progress to a PVS. In fact, a person rarely remains in a coma for more than two to four weeks without recovering, dying, or progressing to a PVS. End stage dementia can also progress to a PVS. What are the rates of recovery from a coma and a PVS? The recovery rate is very dependent upon the cause of the coma/PVS, whether the cause is reversible or not, the amount of damage to the brain, the region of the brain that is damaged, and the amount of time that the person is in a coma or a PVS. When the cause of a coma is corrected before permanent brain damage occurs, the coma generally reverses within days. However, when the death of large areas of the brain occurs, the outcome is generally grim. Dead brain tissue does not regenerate. Recovery from illnesses symptomatic of dead brain tissue (e.g. stroke) usually is a result of other brain tissue being trained to assume the functions of the lost tissue. If not enough brain tissue is left to take over the functions of the lost brain tissue, recovery will not occur. The longer the coma, the larger and more diffuse the area of damage, the older the person, the less are the chances of reversal of the coma and recovery of function. Since a PVS is a late stage outcome of causes of irreversible coma, or the end stages of a dementia, the outlook for recovery is always poor for a person in this state. What about people who recover from a coma after months or even years? Those cases actually are extremely rare. If a coma is caused by traumatic injury with bleeding in the brain, and the injured area is limited, a person has a chance of recovering even when the coma has lasted for several months. This is more common in younger patients. But even in a young person suffering brain trauma, if the coma lasts more than six months, that person will rarely recover. If a person suffers from a prolonged coma not due to trauma, for instance due to a stroke, the chance of recovery is bleak. The rare person who is destined to recover will inevitably show some increase in responsiveness and functioning, however gradual, within the first days to weeks of becoming unconscious. The lack of any improvement over time is another signal that recovery will not occur. A person who suffers from a prolonged coma due to diffuse irreversible damage to the brain caused by a prolonged period of oxygen deprivation, usually more than four or five minutes, has the least chance of recovering. If a coma from this condition, known as “anoxic encephalopathy,” lasts more than a week, recovery is extremely rare. If death does not occur, a person with this condition will commonly progress to a PVS. What happens to the body of the person in a prolonged coma or a PVS? How many of us have seen a movie or television show where a person has been in an unresponsive coma for years, then suddenly wakes up one day, is fully alert, fully functional, and walks away with full strength, looking the same as the day he/she fell into the coma (except, perhaps, for the growth of a beard)? The belief that an irreversible coma or a PVS is a stable non-progressive condition is inaccurate. Although the brain lesion may not be changing or expanding, the changes occurring in the body are relentlessly progressive: * Muscles waste away, and limbs may become contracted and immoveable. * The person has a pre-disposition to develop recurrent pneumonia, due to immobility and an inability to keep secretions out of the lungs. Lungs may scar and collapse over time. * The person has a predisposition to develop recurrent urinary tract infections, especially if a tube or Foley catheter has been inserted into the bladder to drain urine. These infections not uncommonly become generalized, spreading to the bloodstream and causing sepsis, a life threatening infection of the blood. * Skin breakdown and ulcers occur commonly, since the person is unable to move and is incontinent, with no ability to control passage of urine or stool. Once formed, these wounds are very difficult to heal on a permanent basis. The longer the person is in a coma/PVS, the more profound and devastating are the changes suffered by his/her body. When a person is in a coma or a PVS, does the person suffer if feedings are discontinued, or not started? A person in profound coma or suffering from a PVS is unable to experience hunger, thirst or pain. Even if a pain stimulus occurs, there can be no recognition of its presence by the person unless the higher regions of the brain, the brain cortex, can receive and interpret the stimulus. In a person in deep coma or a PVS, the cortex does not function. Therefore, this person would not suffer due to lack of artificial tube feedings. Will hospice care for a person who is in a coma or in a PVS? Hospices do care for persons with these conditions, although a patient like Terri Schiavo is unusual for a hospice. When a person in a coma or a PVS is referred to a hospice, generally the person has decided a priori (e.g. through a living will) not to receive artificial nutrition or hydration should an irreversible coma or a PVS occur. Or the family or other designated caregivers are in agreement that the person would not want these treatments. Or the person is noticeably deteriorating in spite of artificial nutrition and hydration. Death usually occurs well within six months of admission to the hospice. What kind of care would a hospice provide for a person in a coma or in a PVS? A hospice will provide similar care to a person in a coma or a PVS that would be provided to a conscious patient who cannot swallow or move well. When a hospice cares for a conscious person who is unable to swallow, the hospice will take care to prevent symptoms of thirst by moistening the mouth frequently. The hospice will attempt to prevent skin breakdown by turning the person frequently and moisturizing and massaging the skin carefully. If any signs of discomfort occur, medications are administered to maintain comfort. These include medicines to treat pain, shortness of breath, lung congestion, fever, or any other problematic symptoms. Since a person who is severely ill rarely feels hungry even when he/she does not eat, tube feedings are seldom used in a hospice. We know the approaches used by hospice work to keep the patient comfortable because patients who are still alert and able to communicate have told us these approaches keep them comfortable. The same treatments and approaches used in a conscious patient to maintain comfort are used for the person who is in a coma or a PVS. Even though we do not believe he/she is capable of experiencing suffering or pain, all potential causes of discomfort are addressed. In addition, the hospice provides emotional, social and spiritual care to the person’s family and loved ones during this traumatic time. This family care extends beyond the one-year anniversary of the person’s death. Making decisions about starting or stopping artificial nutrition and hydration, or using or foregoing other medical interventions for a person in a coma or a PVS is never easy. Each person deserves to have the information necessary to make an informed choice for him or herself, or for a loved one. Being informed involves knowing the immediate and long term effects of the disease on the person. It is equally important to understand what the available treatments can and cannot do. In this way, the benefits and burdens of each intervention can be weighed more effectively against the benchmarks of each person’s goals and beliefs. More reasoned and consistent treatment decisions can then be made, which lessens the emotional burdens associated with the decision-making. About the author: Dr. Cheryl Arenella is currently doing health care consulting for programs focused on improving end-of-life care. She has over 20 years of experience in the field of Hospice and Palliative Medicine. She is a former trustee of the American Board of Hospice and Palliative Medicine and served for many years as a Medical Director for a large Medicare certified hospice, where she provided medical oversight, direct patient care and administrative program support. Back to the previous page © 2005. American Hospice Foundation. All Rights Reserved. 2120 L Street, NW ~ Suite 200 ~ Washington, DC 20037 Tel: 202-223-0204 ~ Fax: 202-223-0208 ~ E-mail: ahf@americanhospice.org www.americanhospice.org |