(The Intensive Care Unit) A guide to the medical personnel and their roles in providing care. * Anesthesiologist * Attending Physician * Consulting Physicians * Intern * Internist * Neurologist * Neuropsychologist * Neurosurgeon * Nutritionist * Occupational Therapist * Orthopedist * Physiatrist * Physical Therapist * Primary Care Nurse * Psychologist * Rehabilitation Nurses * Resident * Respiratory Therapist * Speech Therapist When will we know the extent of the injury? How long will the stay in the ICU be? How long does recovery take and what can we expect? What can we do to help? Where will we go from here? When will we know the extent of the injury? When the patient "wakes up." Social Workers Family Education Coordinator Chaplain How to get information from doctors and other medical professionals. When will we know the extent of the injury? How long will the stay in the ICU be? How long does recovery take and what can we expect? What can we do to help? Where will we go from here? When will we know the extent of the injury? When the patient "wakes up." (The Intensive Care Unit) A guide to the medical personnel and their roles in providing care. * Anesthesiologist A physician who administers anesthesia for surgery and other medical procedures. This physician may meet with family members before surgery. * Attending Physician The physician primarily responsible for the care of the patient, often a neurosurgeon. * Consulting Physicians Physicians who are specialists in fields other than neurology and neurosurgery. They may be called upon by the attending physician for their expertise on other facets of medicine, especially in the event of other injuries. * Intern A physician who has finished medical training and is usually in the first year of training in a specialty. Interns work under the supervision of attending physicians and residents. * Internist A physician who specializes in internal medicine. They are experts in problems of the heart, digestive tract and other internal organs, and are often consulted after a brain injury. * Neurologist Physician specialist concerned with treating disorders of the brain, spinal cord, nerves and muscles. * Neuropsychologist A psychologist who specializes in evaluating brain/behavior relationships.They use a variety of techniques, including testing. Groups of tests, called batteries, can establish the location of the brain injury. Neuropsychologists plan training programs and recommend alternative cognitive (thinking) and behavioral strategies to help brain-injured people think and behave as close to their pre-injury status as possible. They also get involved in helping families to understand what is happening to their family member. In addition, they help families try to come to grips with the fact that this injury effects not only the person who is injured but all members of the family. Neuropsychologists typically have more time to talk to patients and their families than other members of the medical team. You should feel free to ask to speak to the neuropsychologist. * Neurosurgeon Physician specialist trained to care for all varieties of nervous system problems and perform brain and spinal cord surgery as needed. This person is primarily concerned with coordinating the medical treatment of the brain injured, and deciding whether or not there is a need for surgical treatment. * Nutritionist An expert in the nutritional requirements of patients. Nutritionists are also adept at various methods of feeding, for those unable to take in food and fluid by mouth. * Occupational Therapist OTs work to improve function in the patient's hands and upper body. They become involved in the acute rehabilitation phase.The occupational therapist uses self-care, work and play activities to increase independent function, enhance development and prevent disability. This may include the adaptation of a task or the environment to achieve maximum independence and to enhance the quality of life. * Orthopedist Physician specialist concerned with the study and treatment of the skeletal system, its joints, muscles and associated structures. * Physiatrist A physician who specializes in physical medicine and rehabilitation. Some physiatrists are experts in neurologic rehabilitation. The physiatrist examines the patient to assure that medical issues are addressed; provides appropriate medical information and oversees the patient's rehabilitation program. * Physical Therapist The physical therapist evaluates components of movement, including: muscle strength, muscle tone, and general mobility. This is done initially by moving the arms and legs (called Range of Motion) and thereby exercising unused muscles in order to prevent further deterioration of physical function in the unconscious patient. The physical therapist also evaluates the potential for functional movement, such as the ability to move in the bed, transfers and walking and then proceeds to establish an individualized treatment program to help the patient achieve functional independence. * Primary Care Nurse The nurse principally responsible for the nursing care of a given patient. The primary care nurse develops and implements a care plan, participates in conferences, collaborates with the patient, the rehabilitation team, and the family, as well as evaluating the outcome of care. * Psychologist A professional specializing in counseling, including adjustment to disability. Psychologists use tests to identify personality and cognitive functioning. This information is shared with team members to assure consistency in approaches. The psychologist may provide individual or group psychotherapy for the purpose of cognitive retraining, management of behavior and the development of coping skills by the patient and members of the family. * Rehabilitation Nurses Nurses especially trained in rehabilitation techniques as well as basic nursing care. Nurses assist the patient and family in acquiring new information, developing skills, and achieving competence. They provide and coordinate all patient care, liaison to other team members and are often a patient advocate. * Resident A physician who has completed medical training and is taking additional training in a specialty, such as neurosurgery. Residents work under the supervision of attending physicians. * Respiratory Therapist Concerned with helping the patient breathe adequately as a means of preventing further complications and/or infections. If the patient is on a respirator, the respiratory therapist is responsible for maintaining the equipment. If the patient is unable to cough up secretions, the respiratory therapist may assist by lowering the head, tapping the back, and suctioning the patient. * Speech Therapist Assists patients in their recovery of all aspects of communication skills and swallowing ability. When will we know the extent of the injury? How long will the stay in the ICU be? How long does recovery take and what can we expect? What can we do to help? Where will we go from here? When will we know the extent of the injury? When the patient "wakes up." Social Workers Family Education Coordinator Chaplain How to get information from doctors and other medical professionals. When will we know the extent of the injury? How long will the stay in the ICU be? How long does recovery take and what can we expect? What can we do to help? Where will we go from here? When will we know the extent of the injury? When the patient "wakes up." "But 'waking up' is a slow process of what we call 'emerging.' The first part of the waking up process is when the eyes open and they have wake/sleep cycles, the sleep cycles being the longest. As the wake cycles get longer and longer, movement begins to occur; then speech; then purposeful movement; reaching for things, making things work -- purposeful speech -- asking questions. Arms and legs are the first things to move; then the head, from side to side. Speech begins with moaning, then moves on to mumbling, and happens more often when lying in bed." ~ Martha Remember: No two brain injuries are alike. It should be remembered that sometimes, while a patient is in a coma, they may exhibit behaviors which mimic conscious behaviors. For instance, they may turn their head toward a sound. This may or may not be a purposeful movement. I can not stress enough that coma is often not what we imagine. No two patients are the same. Some will display movement and sounds throughout the comatose period, some may need to be restrained to prevent injury to themselves or others. It is best to view these behaviors realistically. This is the hard truth about coma; we do not know if or how well any particular patient will recover. But coma is rarely like it is portrayed in movies and on television, where one day the patient opens their eyes, smiles, and is discharged the next day. Recovery from brain injury takes time. The brain is very complex. Even in the event of a "mild" brain injury, when there is no loss of consciousness, people often experience long term problems with memory, fatigue, concentration, anger, dizziness, etc. These problems may never be resolved and may require lifetime coping strategies. Even in the event that the patient recovers quickly, it may take years to fully understand the extent of the injuries. If they are able to return to work, they may do an adequate job until faced with a new task or placed in a stressful situation.. The extent of memory impairment may not be evident until they are required to learn a new job. They may have deficits that will not be obvious until faced with a new or different situation or environment. These "subtle" deficits may be harder to find help for than more obvious deficits. That is why you must be informed about brain injury. And why it is important to develop support systems now. You must be prepared for an injury which is permanent, as hard as that sounds. Information is your best option for dealing with brain injury. How long will the stay in the ICU be? "As soon as they are off life support they are out of ICU and onto the Neuro floor.The length of stay on the Neuro floor is usually around 3 weeks then the various REHABs come in to do their evaluations based on the space that is available." ~ Martha The length of time varies from patient to patient. There are many variables which will determine how long the stay in ICU will be; the nature of the injury, the patient's overall health and strength, the extent of other injuries, and whether or not medications are used to prevent the patient from injuring themselves further. Although it is understandable that you want to spend as much time with the patient as possible during this time, this is a good time for you to tackle some of the arrangements you may have to make. Once the initial crisis is over and the waiting begins, use this time wisely. You will want to be available to the patient when they begin to emerge. Also be aware that your own energy levels may diminish when the patient is released from ICU. Many people "run on adrenaline" during this period of time and find themselves exhausted at the end of the vigil. You need to take care of your own needs so that you will be in shape, emotionally and physically, to cope with a long recovery period. This injury does not only affect the person who has suffered it, it is a traumatic experience for family and friends as well. It is not uncommon for the family member who has functioned so well during the initial crisis to crash once their reserves run down. Most of the decisions for care in this acute stage are fairly easy to make as they involve life-saving strategies for the patient. As the patient emerges, decisions about care become more difficult. Prepare yourself by becoming informed. Pace yourself in preparation for an increasing role in decision-making. You need to follow your heart at this crucial time also. Dealing with pain, loss and grief is a highly individual process. Don't feel guilty about how much or little time you spend in the hospital. If you feel you are helping by being there, that's fine. If you need to take care of your children and home, that's fine too. No one can tell you the best way for you to cope. Keep in mind that the coma patient will most likely not remember the time they spent in ICU, but you will. All we can urge is that you take care of yourself; get enough rest, try to eat properly, and find a few moments here and there for yourself. How long does recovery take and what can we expect? To answer the question, we must first examine what is meant by recovery. Brain Injury is not an illness that one "recovers" from. Through appropriate medical care and rehabilitation, improvement is possible. Because of the complexity of the brain and the unique effect each brain injury has on the survivor, it is impossible to say exactly how long it will be; especially in the first hours, days, and weeks, before you know the outcome. A so-called "mild" brain injury may result in substantial deficits which may affect a person's life permanently, while a person who has suffered a "severe" brain injury may be able to return to a life that is, while not identical to, close to the one they had before the accident. Depending on the nature of the injury, this prognosis will differ from patient to patient and the true extent of their injury may not be known for months or years, especially when the injured person is a child. Sometimes the damage is to one specific area of the brain and doctors can give some opinion as to how damage in that area will affect the patient and perhaps offer a prognosis on the course of recovery. Sometimes the damage is diffuse (in many areas) making it very difficult to determine the outcome. "Wait and see" is sometimes the most accurate answer. "Rate of recovery? It varies, obviously. But the important yardstick is the patient's ability to communicate on a consistent basis. Everyone is warned that their loved one could stay at any level of recovery after the first year and a half, then make small gains for an undetermined amount of time -- even years later." ~Martha While being told "to wait and see" may be very frustrating to the family members of the survivor, it can also be frustrating to the survivor to try to live up to the hopes his/her family has of a speedy and full recovery. The truth is the process of recovery takes longer than you think. The most important role you play in the outcome is to become an advocate for the patient and make sure that he/she receives the best medical care and has access to the rehabilitation programs he/she needs to maximize his/her potential. (Including current advances in treatment and rehabilitation). One of the best ways you can do this is by learning everything you can about brain injury. This means asking lots of questions of medical and health personnel. It also means keeping track of what you've learned. The Brain Injury Association recommends that you keep a looseleaf binder and organize the information you receive in sections (for example; a section on rehabilitation). This will aid you in making informed decisions regarding treatment options for your loved one. What can we expect? Included here are different topics and insights from survivors and caregivers; covering different stages and degrees of recovery: Memory Problems Fatigue Anger Judgment Concentration Disinhibition Dizziness Seizures Depression Thoughts on Recovery from Stephanie: When I was nursing we learned of a study, done by a surgeon, that found that people under anesthesia healed more quickly and had fewer complications when told that the surgery was going well, that it looked like healing would be complete and rapid, and the outcome of surgery was positive. Perhaps it was the power of suggestion to an unconscious person's mind, but to many peoples' surprise it worked. In ICU we began speaking to a person who was in a coma as though the person would have a positive outcome, and refrained from saying things in earshot that were negative, even though we could not be sure that we were heard, or that it would bring about a positive change for every person. Realistic but optimistic talk did not bring every person out of a coma, or completely heal every injured brain, but good natured, optimistic banter was remembered by some who surprisingly told us that it helped them by giving them something hopeful and encouraging to hold on to. Upon awakening, those who could recall conversations remembered people and words that no one knew was being heard by the person in a coma. One young woman, who wasn't spoken positively about, told me that she had heard the prognosis that it would be better if she didn't make it. She said she had wanted to scream and in her aware coma moments afterward she was overcome by despair. In the time after she did regain consciousness and became stable enough to transfer out of ICU she was despondent. Though it has been many years since I have seen her I still remember her because her despair was so palpable. She left ICU with a psychological burden in addition to her physical hurdles. I wondered what would become of her. Words had such a powerful impact, and no one knew they were heard. Remember, keep a positive attitude. What can we do to help? First and Foremost: Take care of yourself. Learning to manage stress is the most important step you need to take at this time. While your loved one is in the ICU, it is very easy to neglect your health, your job and other family responsibilities. While we understand that it is impossible to avoid stress during this time of crisis, there are ways to cope with stress. Avoiding becoming exhausted and irritable yourself may be the best way to help the patient. Undoubtedly your life has suffered an instant upheaval. Often with brain injury we are not sure how long the crisis will last. This constant strain and worry is not healthy for you. Signs of stress include: + Inability to sleep, + Nightmares, + Poor self-care, + Poor appetite, + Guilt or self-blaming, + Feelings of loneliness, + A sense of worthlessness, + Excessive use of alcohol and/or medications, + Not knowing where to turn for help. In order to manage stress, make a commitment to take care of yourself: * Eat properly. A healthy diet will help your body deal with stress. * Get Enough Rest. In the early days of crisis, your body will run on "nervous energy", which will eventually run out. You must take time away from the hospital to rest. Arrange to have other family members contact concerned friends and relatives so that the moments you spend away are not spent giving constant progress reports. * Let Others Help. When someone offers to help, accept the offer. Be specific about how the person can help, either at home or in the hospital. * Express Your Feelings. No one expects for you to go through this alone. You may find it helpful to keep a journal of your feelings. You may wish to make note of questions, things you need to do, what your concerns are. Be sure and utilize the hospital staff to answer your questions and concerns. * Be Kind To Yourself. Many people in your situation have trouble reading or following the plot of a movie, yet you have countless hours of waiting to fill. Activities like puzzles, video games, needlework, etc. may help fill the time without requiring too much concentration. Take a break away for a walk, or lunch with a friend. Sometimes a few minutes out of the hospital can make you feel refreshed and recharged. Ask the staff about the location of courtyards, lounges and other hospital facilities that may give you a break from the ICU waiting room. * Pace yourself. Keep in mind that brain injury recovery is a long process which will require great endurance on your part. Getting adequate rest during the trauma stage will save your resources for your part in rehabilitation. During the initial stages most of the patient's needs are being met by the medical team, later on the family takes a larger role. Where will we go from here? "What determines where the survivor goes? Post acute or acute? You already have that information in your evaluation section --- levels 1-4 go to post acute; 4 and up go to acute. However, it is important to know that if the patient does manage to get evaluated for acute, it doesn't mean they will stay there! If they don't make enough progress quickly enough they will end up in the post acute facility -- or, as I advocate, they should go home and do outpatient therapies." ~ Martha This is a very individual determination, based on many factors: * The extent of the injury, * The level and rate of recovery, * The need for continuing care, * Availability of services, * Financial considerations, * The extent to which you are willing to advocate for care. Patients will be evaluated by the medical team, and also by the facility to which they may be transferring to. You may be asked to make decisions which may seem very overwhelming. Take notes, record meetings, take time and review options. Ask lots of questions. You may wish to make a decision based on many factors; the reputation of the facility, the location of the facility, the types of services offered, the goals of the facility, the special needs of the patient. Your decision may be limited by financial factors. Keep in mind that once the patient begins to emerge you may wish to be involved on a regular basis with physical, occupational or speech therapies, so location may be important. Typically, the patient, upon leaving the ICU, will be transferred to the hospital's neuro unit, then to a rehab facility. Sometimes the patient may be transferred to a nursing facility on an interim basis if he/she has not achieved a level of responsivity which would allow him/her to benefit from a rehabiltation facility or a coma recovery program. From there, depending on the patient, they will either be evaluated for care in another facility or returned home. None of these transfers are totally dependent on the patient being fully "awake and alert". (The Intensive Care Unit) Suggestions on locating other resource personnel in the hospital setting. When a person is in an ICU, family members may have to turn to other resource personnel in the hospital. Social Workers Social Workers are available to help families in many ways. They provide good resources on advocacy for the patient, support for the family and, depending on the patient; can help with many of the concerns a family may have about financial issues. Family Education Coordinator The family education coordinator can help the family in locating resources to help them understand brain injury; the effect it will have on the patient, and the effect it will have on the family. Chaplain The chaplain can help the family by listening to their concerns. He can also help with the stress and friction which may occur in a family at this time. The chaplain understands the process of grief a family will experience during their loved one's stay in the ICU. Remember, you are not alone. How to get information from doctors and other medical professionals. SurgeonsWhen a patient is in an ICU, family members and friends will all want and need information. However the medical team caring for the patient must spend their time providing the best treatment for the patient. It is important that the family select a spokesman to liason with the medical team. The family spokesman should write down all questions and concerns of the family. In turn, the spokesman should also take notes on the answers he/she receives in order to pass them on to family members. It is important to remember the recovery process involves a number of specialists who work as a team and information should be sought from all team members in order to understand the patient's situation. The neuropsychologist is an excellent source of information. Feel free to ask to speak with the neuropsychologist. They typically have more time to speak with the family than members of the team dealing with the medical issues. Part of their job is helping the family to understand the effects brain injury on the patient, and the family members as well. There should be preparation for some unpleasant information. Every brain injury is unique. No one can predict the outcome of a brain injury. In general terms, it is believed that the longer the coma lasts, the less likely the individual is to recover fully. However, the location of the damage in the brain may be a more significant indicator. The full effect of the brain injury may not be known for months or years. There may be no answers to your specific questions. Your questions may be answered with "wait and see." Although this may be the most accurate answer to your questions, there is more you can do. Use this time to learn about brain injury. Your loved one has suffered a brain injury. The extent of recovery is unpredictable. Brain injury is now a part of your life and understanding is the first step in coping with the grief. Many hospitals have libraries with information on brain injury, and the staff will help you to locate any information available. There is a national Brain Injury Association (BIA). Most states have brain injury associations. We attempt to answer some of your questions here, and provide resources on our resources page. Remember, you are not alone. I know the first few days/ weeks after a tbi are the toughest, because there's so much waiting and wondering - believe me, I've been there. Continue to talk to and comfort your loved one and assume that he/she can hear you. Look for telltale responses, such as eye/hand movements. Find any and all information you can about tbi, because you're going to have neuros throwing strange terminology at you that you don't understand. Ignore any doctor who says there is no chance of recovery - there's ALWAYS a chance for recovery to some degree. Above all, don't give up HOPE! We are here for YOU. Lean on us.