Spinal Cord Injury C4-C8
A Guide for Families
You are an important member of your child’s recovery team. Use this checklist to monitor your child’s progress.
Our goal is to help your child and family adapt to changes after injury or illness. Over the course of your stay you and your child will be working with a team of professionals including doctors, nurses, occupational (OT), physical (PT), and speech (ST) therapists and other rehabilitation team members. Together, we will perform a complete evaluation of your child's needs and abilities, and develop a treatment plan that takes into account your family's circumstances.
You and your child’s team will meet weekly to develop goals and check in on your child’s progress. Help us by bringing your care notebook, this checklist and your questions to these meetings.
Step 1
I will start to learn how to do the following:
Positioning and exercise
- Upper and lower body range of motion stretches with help
- Upper body strengthening program
- How to stay seated with help
- Shoulder protection strategies with help
Recreation and leisure
- Learn what recreation and play opportunities are available in the hospital
- Identify recreation activity to have in my room
Self care
- Pressure releases
- Skin care routine and learn about protecting my skin
- Ways to support my circulatory system
- Ways to support my respiratory system
- Keep my lungs clear
- Manage my fluids
- Bowel and bladder care
- Feed myself*
- Groom myself* (brush teeth, comb hair)
- Dress myself*
- Get fitted for splints and start wearing them, if needed
- Brace care
*Level of help will depend on type of injury
Wheelchair and special equipment
- Sit in my wheelchair for up to 4 to 6 hours a day
- Propel my wheelchair
- Begin wheelchair endurance program
- Learn how my home can be modified for a wheelchair
- Use a gooseneck mirror
- Learn about equipment I will need such as gloves, a cup holder and reacher
- Use a special chair to bathe and go to the toilet
Other
- Use call light or switch to call a nurse to come to my room
- Meet my speech therapist to learn how to communicate my wants and needs with the help of my family
- Learn about a breathing technique called GBP (Glossopharyngeal Breathing), if needed
- Work with my speech therapist to check my swallowing skills
Step 2
Each step will build on the one before.
Positioning and exercise
- Do lower body range of motion stretches with help from my family
- Do upper body exercises with help from my family
- Shoulder protection strategies with help
- Roll side to side in bed using the bed rails with some help
- Sit at the edge of a mat with help
Recreation and leisure
- Learn how to do activities that are important to me in my free time
- Learn how to keep in touch with friends while in the hospital
- Explore benefits for leisure
- Apply for accessible parking permit
Self care
- Do pressure releases with just a little help – my family knows how to help
- Learn more about skin care and how to put on my splints
- Complete skin checks with a lot of help from my nurse
- Feed myself*
- Groom myself*
- Dress myself*
- Check my blood pressure with help from my family
- Learn more about my circulatory system- my family is learning too
- Learn more about how to protect my respiratory system
- Learn how to keep my lungs clear*
- Learn about AD (autonomic dysreflexia)
- Learn more about bowel and bladder care
- Learn about my medicines
*Level of help will depend on type of injury
Wheelchair and special equipment
- Sit in a wheelchair for up to 8 to 10 hours a day
- With help from my therapist, my family knows what they need to do to prepare my home for my wheelchair
- Learn about other equipment to use at home
- Start wheelchair endurance program
Other
- Communicate by myself with my family and rehab staff
- Practice GPB
- We have been given a backpack by our nurse and know what it should have in it
- Review the “Yes You Can” book with my nurse
- Learn about medical conditions related to spinal cord injury
- Learn about ADA (Americans with Disabilities Act)
Step 3
Many skills have been introduced by step 3. You will spend the next steps building strength and learning to do tasks more independently.
Positioning and exercise
- Do lower body range of motion stretches with help from my family
- Do upper body exercises and stretches by myself or with help from my family
- Roll side to side in bed with a little help from my family
- Sit at the edge of the mat with help
- Sit at the edge of the mat and touch the floor with both hands with help
- Sit up from lying on my bed with help
- Transfer on a level surface using a sliding board
- Discuss shoulder protection strategies
Recreation and leisure
- Participate in therapeutic recreation (TR) group activities with assistance or using adaptive equipment
- Participate in off-unit recreation activities (Playroom, Teen Room, Cafeteria)
- Think about recreation/play activities that I will do at home
- Initiate social contact with my friends
- Identify activities to do with my friends
- Explore adaptive recreation opportunities via Internet/videos
- Learn about transportation options
- Attend therapeutic community outing
- Begin to plan weekend family day pass and identify transportation options and family training required
Self care
- Do pressure releases while in wheelchair
- Do bed turns and skin checks with the help of my family
- Drink the right amounts of fluids
- Feed myself*
- Groom myself*
- Dress myself*
- Bathe myself with help*
- Learn how to cath myself and prevent urinary tract infections
- Do my bowel care with help from my family
- Protect my respiratory system with help from my family with coughing and fluids
- Manage my circulatory system with help from my family
- Check my blood pressure with help from my family
- Take my medicines with help from my family and know what medicines I take and what they are for
*Level of help will depend on type of injury
Wheelchair and equipment
- My family understands what changes are recommended for my home to be ready for me and my wheelchair
- Learn how to operate a power wheelchair
- Learn how to move forward and turn indoors
- Learn about adaptive equipment
- Begin learning about and using equipment to help me in my daily tasks
Other
- Communicate my wants and needs
- Review the “Yes You Can” book with my nurse
- Do GBP on my own
- Talk to my rehab care coordinator about needs for help at home
- My family and I will continue training in autonomic dysreflexia (AD), deep vein thrombosis (DVT) and hypotension prevention
Step 4
I will spend the next steps building strength and learning to do tasks more independently.
Positioning and exercise
- Roll side to side in bed without rails by myself or with help from my family
- Sit up from lying on my bed or a mat with a little help
- Complete a level transfer using a sliding board with help
- Do upper body stretches and strengthening exercises by myself or with help from my family
- Learn what happens if I fall and what to do to get back up
Recreation and leisure
- Engage in recreation/play activities during free time with help
- Complete process to plan for participation in activities after discharge
- Learn about local community-based recreation resources that provide adaptive recreation opportunities
- Help plan therapeutic community outing considering functional abilities and management of personal care needs
- Demonstrate improved functional skills for accessing community settings on therapeutic outing
- Set plan for family day pass
Self care
- Do pressure releases while in wheelchair
- Feed myself*
- Groom myself*
- Dress myself*
- Bathe myself with help*
- Transfer on and off toilet with help*
- Do my bladder and bowel management on my own or with help from my family
- My family knows how to do skin checks twice a day
- Keep track of how much I drink
- Take medicines on my own or with help from my family
- Begin to learn how to give an injection
- My family has scheduled a time to learn CPR before I leave the hospital
*Level of help will depend on type of injury
Wheelchair and other equipment
- Keep learning how to operate a power or manual wheelchair
- Move forward and turn indoors by myself
- Turn all the way around and back up indoors with a little help
- Begin learning how to operate wheelchair outdoors on sidewalks, curb cuts, doorways, thresholds and when crossing the street
- Begin to reach for items at different levels (from the floor, drawers, cabinets, and refrigerator), open doors and cupboards based on my level of function
- Access items in my backpack behind or under my chair with help*
- Begin learning about and using equipment to help with living skills
- Learn about best heights for desks and tables
*Level of help will depend on type of injury
Other
- Review the “Yes You Can” book with my nurse
- My family knows how to help me protect my respiratory system
- My family knows how to check my blood pressure and prevent autonomic dysreflexia and deep vein thrombosis
- My family knows how to use a nasogastric (NG) feeding tube, if needed
- Work on using a one-way speaking valve , if needed
- Practice GPB, if possible
- My family and I will start to understand issues around aging and spinal cord care
- I will be able to explain ADA and my rights and responsibilities based on therapeutic outing experiences
Step 5
I will spend the next steps building strength and learning to do tasks more independently.
Positioning and exercise
- Sit up from lying on my bed with a little help
- Complete a level transfer with a sliding board with some help
- Complete a transfer on slightly uneven surface with a sliding board with some help
- Transfer in and out of the car using a sliding board with some help
- Upper body strengthening and range of motion exercises by myself or with help from my family
- Discuss shoulder protection strategies
- Use standing frame for 5 minutes
Recreation and leisure
- Initiate productive use of free time
- Interact frequently with friends
- Contact 1 or 2 recreation resources to schedule a visit for next week’s outing
- Attend therapeutic outing requiring little help from my family for functional skills
- Find 1 or 2 community based resources that will provide adaptive recreation opportunities and contact them for a visit if possible for next week’s outing
- Complete day pass with my family
Self care
- Do pressure releases on my own or with help from my family
- Feed myself*
- Groom myself*
- Dress myself*
- Put my splints and braces on myself or with the help of my family
- Bathe myself with help*
- Transfer on and off toilet with help*
- Do my bladder and bowel management on my own or with help from my family
- Drink the right amount of fluids
- Put on braces and splints by myself*
- Check skin twice a day by myself or with help from my family
- Take medicines on my own or with help from my family
- Give myself an injection or receive injections from a family member
*Level of help will depend on type of injury
Wheelchair and other equipment
- Continue to learn to use a power wheelchair
- Move forward, back up and turn all the way around indoors by myself
- Use sidewalks and curb cuts, move across thresholds, and go through doorways and cross streets by myself
- Keep learning how to operate wheelchair outdoors on sidewalks, curb cuts, doorways, thresholds and when crossing the street
- Reach for items at different levels (from the floor, drawers, cabinets, and refrigerator), open doors and cupboards based on my level of function
- Access items in my backpack behind or under my chair with help*
- Keep learning about and using equipment to help me through the day
- My family knows what respiratory support equipment I will need at home
*Level of help will depend on type of injury
Other
- Practice GPB, if possible
- My family knows how to protect my respiratory system, including helping with coughing and putting on a CPAP or BiPAP, if needed
- My family knows how to check the placement of my NG tube and how to attach bags of liquid to the tube, if needed
- Review the “Yes You Can” book with my nurse
Step 6
I will be ready for a day pass at the end of this week.
Positioning and exercise
- Sit up from lying on my bed by myself or with a little help
- Complete a level transfer with a sliding board to or from a mat with some help
- Complete a transfer on uneven surfaces with about a 4-inch height difference using a sliding board with someone watching
- Transfer in and out of the car using a sliding board with a little help
- Do transfers without sliding board with someone watching
- Upper body strengthening and range of motion exercises by myself or with help from my family
- Learn about the upper body strengthening program I will do at home
- Continue endurance program for manual wheelchair, if possible
- Discuss shoulder protection strategies without help
- Use standing frame for 10 minutes
Recreation and leisure
- Know how to use leisure resources available upon discharge
- Explore grants for funding adaptive equipment to enhance access to recreation
- Plan participation in therapeutic outing including need for assistance and management of personal care needs
- Participate in outing to community-based program with adaptive recreation equipment
- Require little assistance to plan and complete family pass
Self care
- Do pressure releases on my own or with help from my family
- Feed myself*
- Groom myself*
- Dress myself, including gathering my clothes the night before*
- Put on braces and splints by myself*
- Transfer on and off shower chair or tub bench with help*
- Bathe myself with help*
- Transfer on and off toilet with help*
- Do my bladder and bowel management on my own or with help from my family
- Drink the right amount of fluids
- Check skin twice a day by myself or with help from my family
- Take medicines on my own or with help from my family
- Give myself an injection or receive injections from a family member
- Prepare age-appropriate meal or snack with help*
- Open and close doors*
- Reach for items from wheelchair level*
- I have written information about skin care, diet, medicines and bowel and bladder management in my care notebook, if needed
*Level of help will depend on type of injury
Wheelchair and special equipment
- Do a wheelie by myself and hold it for at least 30 seconds
- Do a pop-up to get over small obstacles and thresholds by myself
- Get equipment needed for day pass
- Check my backpack for supplies needed for day pass
- Learn about chest straps and seat belts that will keep me safe while moving
- Equipment and supplies I will need at home have been ordered
Other
- Meet with my speech therapist to check my communication skills
- Communicate my wants and needs without help
- My family knows how to provide my respiratory care
- Review the “Yes You Can” book with my nurse
- Discuss safety issues related to spinal cord injury
- Discuss aging and spinal cord injury issues
Step 7
I will be ready for an overnight pass or simulate spending the night away from the hospital by the end of this week.
Positioning and exercise
- Sit up from lying on my bed by myself
- Complete a level transfer with a sliding board to or from a mat with some help
- Go up and down a short ramp in a manual wheelchair, if possible
- Upper body strengthening and range of motion exercises by myself or with help from my family
- Show my therapist the upper body strengthening program I will do at home
- Continue endurance program for manual wheelchair, if possible
- Discuss shoulder protection strategies
- Use standing frame for 15 minutes
Recreation and leisure
- Initiate appropriate use of free time including mixture of in-room, on-unit, around-hospital activity
- Interact socially with family and friends on regular basis
- Learn about precautions for returning to leisure and accessing the community
- Complete community safety evaluation
- Identify other transportation training needs
- Identify other recreation/social experience training needs as appropriate
- Complete family overnight pass or in-room 24-hour care
Self care
- Do pressure releases on my own
- Feed myself*
- Groom myself*
- Dress myself, including getting my clothes the night before*
- Put on braces and splints by myself*
- Transfer on and off shower chair or tub bench with help*
- Bathe myself with help*
- Transfer on and off toilet with help*
- Do my bladder and bowel management on my own or with help from my family
- Drink the right amount of fluids
- Check skin twice a day by myself or with help from my family
- Take medicines on my own or with help from my family
- Give myself an injection or receive injections from a family member
- Prepare age-appropriate meal or snack with help*
- Open and close doors*
- Reach for items from wheelchair level*
*Level of help will depend on type of injury
Wheelchair and special equipment
- Gather supplies for overnight pass
Other
- Check to make sure all sections of my care notebook are up to date
- Review the “Yes You Can” book with my nurse
- Learn about support for me and my family close to where I live
Step 8
I will be ready to go home at the end of this step.
Positioning and exercise
- Complete a level transfer with a sliding board to or from a mat with help
- Use standing frame for 30 minutes
- Go up and down a short ramp in a manual wheelchair, if possible
- Show my therapist the upper body strengthening program I will do at home
- Show my therapist the shoulder protection strategies I will use at home
- Transfer in and out of a car with help
Recreation and leisure
- Be able to state all precaution for returning to leisure and accessing the community, state emergency plan independently
- Set goal to incorporate recreation and leisure into daily routine and identify resources for 2 new recreation activities to explore
- Address transportation training needs as appropriate
- Address recreation/social experience training needs as appropriate
- Safely access the community with appropriate help from my family by participating in day, evening and/or overnight family passes
Self care
- Do pressure releases on my own or with help from my family
- Feed myself*
- Groom myself*
- Dress myself, including gathering my clothes the night before*
- Transfer on and off shower chair or tub bench with help*
- Bathe myself with help*
- Transfer on and off toilet with help*
- Finalize my home bladder plan
- Finalize my home bowel program and learn what to do if things change
- Put on braces and splints by myself*
- Finalize my home skin care program and supplies
- Finalize my medication plan, including injections
- Prepare age-appropriate meal or snack with help*
- Open and close doors*
*Level of help will depend on type of injury
Wheelchair and special equipment
- Access items from behind or under my wheelchair
- I have the supplies and equipment that I need for home and information about the things I will be using in my care notebook
Other
- Review with my nurse all training needed before going home
- Meet my outpatient nurse at my discharge team meeting if I will be returning to Seattle Children’s for follow-up care
- Meet with rehab psychologist to discuss my feelings about going home
- Hospital staff will coordinate with my school for a timely and safe return
- Learn how my care needs will be met at school
To Learn More
- Rehabilitation Medicine
206-987-1500 - Occupational and Physical Therapy
206-987-2133 - Ask your child's healthcare provider
- seattlechildrens.org/patient-education
Free Interpreter Services
- In the hospital, ask your nurse.
- From outside the hospital, call the toll-free Family Interpreting Line, 1-866-583-1527. Tell the interpreter the name or extension you need.
