Spinal Cord Injury C1-C3 With a Ventilator

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 considers 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.

I will start to learn how to do the following: 

• Upper and lower body range of motion stretches with help
• Begin training for rolling side to side in bed
• Begin training on transfers

• Learn what recreation and play opportunities are available at the hospital
• Identify reaction activity to have in my room

• Pressure releases
• Skin care routine and learn about protecting my skin
• Ways to support my circulatory system
• Ways to support my respiratory system and signs of ventilator associated pneumonia (VAP)
• Keep my lungs clear
• Manage my fluids
• Bowel and bladder care
• Learn how to eat safely or get nutrition from a gastric tube or nasogastric (NG) tube
• Direct a family member to groom me (brush teeth, comb hair)
• Direct a family member to dress me
• Getting fitted for splints and start wearing them, if needed
• Brace care

• Sit in my wheelchair for up to 4 to 6 hours a day
• Learn how my home can be modified for a wheelchair
• Learn about equipment I will need for toileting, bathing and transfers
• Learn about the ventilator

• Use call light or switch to call a nurse to come to my room
• Meet with a therapist to get my swallowing ability checked
• Meet with a therapist to get my communication ability checked
• Learn how to communicate my wants and needs with the help of my family

Each step will build on the one before.

• Do my upper and lower body range of motion stretches with help from my family
• Do neck exercises (if cleared with my doctor)
• Begin training for positioning in wheelchair
• Continue training for rolling side to side in bed
• Complete training on lift transfers

• 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 an accessible parking permit

• Do pressure releases 
• Learn more about skin care 
• Eat and receive nutrition with help from my family or caregiver
• Direct a family member to groom me (brush teeth, comb hair)
• Direct a family member to dress me
• Learn more about putting on my splints and braces
• Learn more about my circulatory system 
• Learn more about how to protect my respiratory system
• Learn about AD (autonomic dysreflexia) 
• Learn more about bowel and bladder care
• Learn about my medicines

• Sit in a wheelchair for up to 8 to 10 hours a day
• Begin to learn how to operate a power wheelchair
• With the help of 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
• Learn about items in my portable respiratory pack

• Communicate by myself with my family and rehab staff
• 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)

Many skills have been introduced by step 3. You will spend the next steps building strength and learning to do tasks more independently. 

• Do my upper and lower body range of motion stretches with help from my family
• Do neck exercises (if cleared with my doctor)
• Continue training for positioning in wheelchair
• My family helps me with rolling side to side in bed with only a little help

• Participate in therapeutic recreation group activities with assistance or using adaptive equipment
• Participate in off-unit recreation activities (Teen Room, Playroom, Cafeteria)
• Think about recreation/play activities that I will do at home
• Initiate social contact with my friends
• Explore adaptive recreation opportunities via Internet or videos
• Learn about transportation options
• Attend therapeutic community outing
• Begin to plan weekend family day pass

• Do pressure releases while in wheelchair by myself or with help from my family
• Turn in bed with help from my family
• Skin care and checks with the help of my family
• Eat and receive nutrition with help from my family or caregiver
• Drink the right amounts of fluids
• Direct a family member to groom me (brush teeth, comb hair)
• Direct a family member to dress me
• Transfer on and off the toilet chair with help
• Learn more about how to protect my circulatory system 
• Check my blood pressure with help from my family
• Learn more about how to protect my respiratory system
• Learn more about bowel care and bladder
• Take my medicines with help from my family and know what medicines I take and what they are for

• Continue learning how to operate a power wheelchair
• Learn how to move forward and turn indoors in my wheelchair with some help
• My family understands what changes are recommended for my home to be ready for me and my wheelchair and other equipment
• Begin learning about and using equipment to help me in my daily tasks

• Communicate my wants and needs
• Review the “Yes You Can” book with my nurse
• My family and I will continue training in autonomic dysreflexia (AD), deep vein thrombosis (DVT) and hypotension prevention
• Talk to my rehab care coordinator about needs for help at home
• Talk to my rehab care coordinator about funding options and fill out an application for Medically Intensive Child Program (MICP)

My family and I will spend the next steps continuing to learn and practice the skills needed to stay safe and become as independent as possible.

• Roll side to side in bed with help from my family
• My family knows how to position me in my wheelchair
• Do upper body stretches and exercises with help from my family

• Engage in recreation or play activities during free time with help
• Complete process to plan for participation in activities after discharge
• Explain ADA and my rights and responsibilities based on therapeutic outing experience
• 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
• Plan family day pass and identify transportation options and family training required
• Learn about local community-based recreation resources that provide adaptive recreation opportunities

• Do pressure releases while in wheelchair
• Skin care and skin checks twice a day
• Eat and receive nutrition with help from my family or caregiver
• Drink the right amount of fluids
• Direct a family member to groom me (brush teeth, comb hair)
• Direct a family member to dress me
• Put on my splints and braces with help from my family
• Do my bladder and bowel care with help from my family
• Take medicines 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

• Move forward and turn wheelchair indoors with only a little help
• Turn all the way around in my wheelchair with some help
• Back up wheelchair indoors with some help
• Move wheelchair on sidewalks, on curb cuts, through doorways, over thresholds and across streets with some help

• Review the “Yes You Can” book with my nurse
• My family knows how to help me protect my respiratory system, including managing my trach or ventilator
• 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
• My family has written information about my medicines
• My family and I will start to understand issues around aging and spinal cord care
• Explain ADA and my rights and responsibilities

My family and I will spend the next steps continuing to learn and practice the skills needed to stay safe and become as independent as possible.

• Begin training on how to do a transfer using a sliding board in case of emergency
• Stretches and range of motion exercises with help from my family

• Initiate productive use of free time
• Interact frequently with friends
• Attend therapeutic outing requiring little help from my family for functional skills
• Complete day pass with my family
• Contact 1 or 2 recreation resources to schedule a visit for next week’s outing

• Do pressure releases while in wheelchair
• Put on my splints and braces with help from my family
• Skin care and skin checks twice a day
• Eat and receive nutrition with help from my family 
• Drink the right amount of fluids
• Direct a family member to groom me (brush teeth, comb hair)
• Direct a family member to dress me
• Do my bladder and bowel care with help from my family
• Take medicines with help from my family
• Receive injections from a family member

• Keep practicing wheelchair skills
• Transfer using a lift with help from my family
• Keep learning about and using equipment to help with living skills
• My family knows what respiratory support equipment I will need at home

• My family knows how to check the placement of my NG tube and how to attach bags of liquid to the tube
• My family knows how to help me protect my respiratory system
• My family knows how to protect my skin, including issues related to
  turning, positioning and skin checks
• My family knows how to put on my splits and brace and how to check them
• My family knows how to do my bowel and bladder care
• My family knows how to give my medicines, including injections
• Review the “Yes You Can” book with my nurse

I will be ready for a day pass at the end of this week.

• Stretches and range of motion exercises with help from my family
• My family knows how to do a transfer using a sliding board in case of emergency

• 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
• Plan and complete a family pass with only a little help
• Know how to use leisure resources available upon discharge
• Explore grants for funding adaptive equipment to enhance access to recreation

• Do pressure releases on my own or with help from my family
• Put on splints and braces with help from my family
• Skin care and skin checks twice a day
• Eat or receive nutrition with help from my family
• Drink the right amount of fluids
• Direct a family member or caregiver to bathe me
• Direct a family member to groom me (brush teeth, comb hair)
• Direct a family member to dress me
• Do my bladder and bowel care with help from my family
• Take medicines with help from my family
• Receive injections from a family member
• I have written information about respiratory care, skin care, diet and feeding, medicines and bowel and bladder management in my care notebook, if needed

• Keep practicing wheelchair skills
• My family knows how to do a transfer using a Hoyer lift with only a little help
• Get equipment needed for day pass
• Check my AD 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

• Review the “Yes You Can” book with my nurse
• Discuss safety issues related to spinal cord injury
• Discuss aging and spinal cord injury issues

I will be ready for an overnight pass or simulation of spending the night away from the hospital by the end of this week.

• Stretches and range of motion exercises with help from my family
• Show my therapist the stretching and exercise program I will do at home with help from my family or caregiver

• 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
• Identify other recreation or social experience training needs as appropriate
• Identify other transportation training needs
• Complete family overnight pass or in-room 24-hour care

• Do pressure releases while in wheelchair
• Put on my splints and braces with help from my family
• Skin care and skin checks twice a day
• Eat and receive nutrition with help from my family 
• Drink the right amount of fluids
• Direct a family member or caregiver to bathe me
• Direct a family member to groom me (brush teeth, comb hair)
• Direct a family member to dress me
• Do my bladder and bowel care with help from my family
• Take medicines with help from my family
• Receive injections from a family member

• Gather supplies for overnight pass
• My family knows how to transfer me to shower chair with an overhead lift
• My family can transfer me using a Hoyer lift, with another person helping if needed
• Continue training in use of adaptive equipment

• 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

I will be ready to discharge home at the end of this step.

• Show my therapist the stretches and exercises I will do at home with help from my family or caregiver
• Transfer in and out of a car

• Be able to state all precaution for returning to leisure and accessing the state emergency plan on my own
• Address recreation or social experience training needs as appropriate
• Address transportiaon training needs as appropriate Safely access the community with help from my family by participating in day, evening and/or overnight family pass
• Set goal to incorporate recreation and leisure into daily routine and identify resources for 2 new recreation activites to explore

• Do pressure releases while in wheelchair
• Eat or receive nutrition with help from my family
• Direct a family member or caregiver to groom me (brush teeth, comb hair)
• Direct a family member or caregiver to dress me
• Transfer into shower chair to bathe and direct a family member or caregiver to bathe me
• Finalize my home bladder plan
• Finalize my home bowel program and learn what to do if things change
• Finalize my home skin care program and supplies
• Finalize my medication plan, including injections if needed

• I have the supplies and equipment that I need for home and information about the things I will be using in my care notebook
• I will continue training in use of adaptive equipment, as needed

• 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