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INFORM: LEAVING ICU

What's Next

You've made it through the first 72 hours. You're exhausted and sleep-deprived.  You're still reeling from the experience and just trying to grasp the reality of your situation.  Assuming that you're one of the majority of spinal cord injury patients who has required surgery and that you have come out of that surgery successfully and are leaving the ICU, you're going to be moved to one of two places - a hospital bed or a rehabilitation facility.

At this point knowledge is power.  Keep the SIRF PDF document updated.  Ask questions and insist on answers you understand.  Remember, you're going to be repeating this information to others so you need to understand it.  The focus of your care is transitioning from keeping you alive to stabilizing your condition to get you prepared to move to rehabilitation.

Leaving ICU and Going to a Hospital Bed

If you sustained injuries requiring hospitalization, in addition to the spinal cord injury, and those injuries are stabilized, then you will be moved to a private or semi-private room in the hospital until your injuries have healed enough to be moved to a rehabilitation facility.

  • Be Proactive, Vigilant - You are no longer a passive recipient of care waiting to be healed by doctors. Your recovery depends on shifting your mindset from a passive to active role, doing more for yourself, making decisions about care and management, and getting serious about how to live with your disability.

  • New Team, New Evaluation - Moving from ICU to a regular room changes the team responsible for your care. Because this new team is responsible for a different level of care, they will perform a complete new evaluation of your condition. The team also will have fewer staff covering more patients, so your family and friends need to take on a larger role.

  • Bedsores and Infection Prevention - Now is the point you want to learn about bedsores and infections and how to prevent them. Bedsores and skin ulcers result from the body pressing too long on particular points, compounded by moisture, temperature and friction. Bedsores can readily be prevented, but they also can quickly foster debilitating infections. Pneumonia and urinary tract infections are daily concerns. Physical therapy at the hospital will be minimal, but it is critical for you to be moved every 2-3 hours. Demand that your doctor order and the nurses fulfill a schedule for rolling you enough to prevent bedsores.

  • Pain Management, Medications - Pain leads to inactivity which leads to anger, frustration and depression which leads to more pain, a spin cycle of misery with no easy exit. A type of chronic pain called neurogenic or nerve pain often accompanies paralysis. You are responsible for what does or does not go in your body. This means that sometimes you need more and sometimes you should decline to take all the medications prescribed. Work to achieve the right balance of pain reduction without dulling your senses and awareness of what's happening with your body.

  • Visitation - You want family and friends helping you. The hospital wants to limit the number of people and commotion to a manageable amount. You have a right to have someone with you overnight. Develop a list of regular visitors and a schedule for when they can be there to help, and let the hospital staff know about it.

  • Get to Rehab -- Get out of the hospital as soon as you are able and into rehab. The long path to recovery begins in rehab, not in the hospital.

Leaving ICU and Going Directly to a Rehabilitation Facility

In ICU you received the optimal care to treat the trauma of your spinal injury.  The best-case scenario is to move as quickly as possible into a rehabilitation facility ideally suited for your type of spine injury.  In rehab, you can receive optimal care from a specialized staff, plus it provides better resources for your family and friends to support your recovery.

  • Be Proactive, Vigilant - You are no longer a passive recipient of care waiting to be healed by doctors. Your recovery depends on shifting your mindset from a passive to active role, doing more for yourself, making decisions about care and management, and getting serious about how to live with your disability.

  • New Facility, New Team, New Evaluation - Moving from ICU to a rehabilitation facility means a whole new team responsible for your care. This team will first conduct a complete new evaluation of your condition. Your family and friends need to be actively involved in understanding that evaluation and development of treatment plan. Now also is the time for your and your family to develop collaborative relationships with everyone treating you.

  • Bedsores and Infection Prevention - Now is the point you want to learn about bedsores and infections and how to prevent them. Bedsores and skin ulcers result from the body pressing too long on particular points, compounded by moisture, temperature and friction. Bedsores can readily be prevented, but they also can quickly foster debilitating infections. Pneumonia and urinary tract infections are daily concerns. It is critical for you to be moved every 2-3 hours. Make sure your doctor orders, and the nurses fulfill, a schedule for rolling you enough to prevent bedsores.

  • Pain Management, Medications - Pain leads to inactivity which leads to anger, frustration and depression which leads to more pain, a spin cycle of misery with no easy exit. A type of chronic pain called neurogenic or nerve pain often accompanies paralysis. You are responsible for what does or does not go in your body. This means that sometimes you need more and sometimes you should decline to take all the medications prescribed. Work to achieve the right balance of pain reduction without dulling your senses and awareness of what's happening with your body.

  • Visitation - You want family and friends helping you. The rehab facility wants that also. That said, it is still important to respect the privacy and quiet other patients need. You have a right to have someone with you overnight. Develop a list of regular visitors and a schedule for when they can be there to help, and let the hospital staff know about it.

How To Evaluate and Choose a Rehab Facility?

You can expect to spend several weeks in the rehabilitation facility so you want to make sure it is a place you want to be and staff you want to work with on your recovery.  Below are several of the most important questions you will need answered full to enable you to make that decision.  We also have included a list of resources in our Resource Directory that may help you.

  • Is this facility equipped to rehabilitate spinal cord injury patients?
  • Do they have a team that specializes in spinal injury neurological rehabilitation?
  • Have they had someone like me there before.? How long ago?
  • Do they have physical therapy (PT) and occupational therapy (OT) specialists trained to treat spinal cord injury patients?
  • What is visitation policy?
  • Is the facility staffed 24/7/365?
  • What kind of rooms do they have? Private? Semi-private?
  • Do they take my insurance, Medicaid?
  • Who is the medical director and when can I talk to him/her?

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