I Have a SCI, What Now?

Initial Stage of Trauma

When Chris had his accident, family and friends were in shock trying to understand the injury – an injury defined as a spinal cord injury.  Medical professionals drove decisions.

• Non-trauma center: Make sure you are in a reputable Trauma Hospital.
• Med-flight. Insurance may or may not cover a med-flight. There is a nonprofit organization that provides the service for free.
• Emergency Room – Trauma Center. As soon as possible, get a notebook to record notes, names of doctors, etc.

Family Waiting Room

1. Ask for procedures – when and how you can expect to see your loved one.
2. If possible – stay at a local hotel.
3. Begin learning about spinal cord injury.

23 days in SICU

1. Case Manager. Get to know your Case Manager immediately and have him/her review all procedures with you. Insurance, expected length of stay, rehab, etc. If you’re not getting the help – ask for a replacement.
2. Physicians. Learn their routines so you can be part of the team.
3. Medical records. Ask for a copy of all medical records including films before you leave the hospital.
4. Skin Check. As soon as practical – ask for a skin check to make sure that there is no skin break-down. Skin checks should be done daily to avoid pressure sores. 
5. Visitors. Discuss the issue with your loved one – the nurse will be your advocate and help enforce the patient’s wishes.
6. Technology. A terrific option for controlling visitors is having family and friends record a message on a laptop while in the waiting room. We were then able to show it to Chris which was uplifting.
7. Food. Bringing food to the waiting room is helpful.
8. Communication. Bring a laptop to the hospital so you can communicate with the outside world. Use the hospital Care Page or Facebook. It is therapeutic to write updates as well as limit the number of phone calls.
9. Register your loved one at any and all research sites so when a suitable trial comes up – you’re in the database. Currently, there is not one national database.

Rehabilitation

1. Rehabilitation Hospital. You should examine early on what the options are for rehab hospitals and what your insurance will cover.
2. Your Case Manager should set you up with a list of hospitals and make arrangements for you to speak with representatives and/or tour a facility.
3. Beware of recruiting. Rehabs recruit. Keep your eye on the best hospital for your loved one and do everything in your power to get him/her there.
4. Understand that rehab doesn’t necessarily mean complete cure. Pending the injury, there are various results that can happen.
5. Emotional adjustment is one key result and the environment is important because rehab is 60 to 90 days.
6. If you have difficulty with getting to the rehab of your choice, call your Congressman/woman, State Senators, Representatives, Large employers, etc. Major newspapers would be another great option.

Concept of Teams

1. Research rehabilitation hospitals. We had a two people devoted to researching rehab hospitals and helping to advise family on their findings.
2. If the Rehab is out of state, be prepared for insurance to not cover the air ambulance –  which is costly.
3. Research trends on spinal cord injury. Learn as much as you can every day on what SCI is so that you have the tools to communicate with medical professionals.
4. Christopher & Dana Reeve Foundation. This website if full of wonderful information. The Staff is tremendous and they will send you a packet of information to help you through the process.
5. Home Modification. We immediately appointed a team to review home modifications. Sixty or ninety days go by pretty quickly and before you know it you could be on your way home. Notify your local police and fire departents when you come home.
6. Fundraising. We had a team getting ready for fundraising immediately. There are so many things to plan from on line donations to selling tickets, etc.
7. Networking – reaching out to those with SCI and asking for advice. Contact your local SCI organizations.

Inpatient Rehab

1. Meet the Director of the Spinal Cord Injury Unit
2. Identify yourself to the research department
3. Get to know the nurses and nursing assistants – candy is a nice courtesy
4. Monitor the physical therapy and occupational therapy to ensure it is suitable for your loved one’s level of injury
5. Meet with various staff on medical equipment needs
6. The Case Manager is key – he/she will guide you through the process

Outpatient Rehab

1. Seek out gyms and/or rehabs that specialize in SC
2. Establish an in-house gym. FES (functional electrical stim bike), Gliding Standing Machine, EMPI Unit, Matts)
3. Ensure that you are stretched at least one time per day.
4. Work out daily – just like you would have prior to your injury

Note: I am a client of Journey Forward, Canton, MA, Erin Crossman, Derry, NH, Boston Medical, Boston, MA. I work out in my in-house gym daily. I am fine-tuning my work-out plan for my level of injury and I will write on for Bosh Fit shortly. 

The Goal – to continue to live a healthy lifestyle

1.  As a member of Bosh-fit, I have a program I’ve adapted to my level of injury and I’m currently fine tuning it.
2. I work out daily – 7 days per week.
3. I am reviewing my  nutrition plan to ensure a healthy eating style.

Note: It is important to keep your body as toned and as healthy post injury. We know a cure for paralysis will come – we just don’t know the exact date. My goal – our goal – is to work on ensuring my body – your body – is as healthy as possible for when that cure comes. We need to focus on bone density, skin health, lung health, muscle development, etc. Bosh-Fit will have an exercise regime soon!