Everything that matters in the first weeks, in one place. Four situations, four short action lists — each links to the deeper guides when you're ready. You don't have to read everything today.
In the ICU & acute hospital
Right now the medical team is stabilizing the spine, breathing, and blood pressure. Your job is smaller than it feels: take notes, ask questions, and take care of yourself enough to last. New words flying at you? Keep the plain-language glossary handy. Full guide: The First 72 Hours & First 30 Days and The Hospital Phase.
Checklist
- Start a notebook (or phone note): every doctor's name and role, what they said, every procedure and date.
- Identify the attending physician and ask who is coordinating overall care.
- Ask for a case manager / social worker assignment — they drive insurance and rehab placement.
- Get the official injury description in writing: level (e.g., C5), complete vs incomplete (what that means and what to expect at that level), surgery performed.
- Designate one family spokesperson so the team isn't repeating updates to five people.
- Print or save our First 30 Days Packet — contact sheets, logs, and scripts.
- Eat. Sleep in shifts. This is a marathon — collapsing helps no one.
Questions to ask the team
- "What level is the injury, and is it complete or incomplete?" (It may be too early to say — spinal shock can mask function for days or weeks.)
- "Was surgery done to decompress the cord? When?"
- "What complications are you watching for — breathing, blood clots, blood pressure, skin?"
- "When will you start talking about inpatient rehab, and who refers us?"
- "Who is doing daily hand range-of-motion and splinting?" (For a cervical or incomplete injury this should start in the ICU — it's how you prevent hand contractures before they set in.)
Red flags — speak up immediately
Choosing rehab
Where you do inpatient rehab matters more than almost any early decision — specialized SCI rehab measurably changes outcomes. You usually get days, not weeks, to choose. Full guides: Choosing a Rehab Facility · Rehab Finder tool · the 18 SCI Model System Centers.
Checklist
- Ask the case manager today: "Which inpatient rehab facilities are you considering, and are any SCI-specialized?"
- Check candidates in our Rehab Finder and against the Model Systems list.
- Push for a facility that treats many SCI patients per year, not a general rehab floor that sees a few.
- Ask how many therapy hours per day (3+ hours, 5–6 days/week is the inpatient standard).
- If insurance pushes a weaker facility, appeal — use the call script in the First 30 Days Packet.
- Distance matters less than specialization. Six weeks somewhere excellent beats six weeks somewhere close.
Questions to ask each facility
- "How many spinal cord injury patients did you treat last year? Do you have a dedicated SCI unit and SCI-experienced physiatrists?"
- "What's the average length of stay for an injury like this, and what decides discharge?"
- "Do you train family/caregivers before discharge?" (Why this matters.)
- "Do you have peer mentors, a urologist on staff, wheelchair seating specialists, and a day program or outpatient follow-up?"
Red flags
- Nobody can tell you how many SCI patients they see.
- "Rehab" that's mostly bed rest with under an hour of therapy a day.
- No plan for bladder/bowel education — that's core SCI rehab, not optional.
- Pressure to discharge to a nursing home without exploring inpatient rehab first — appeal it.
Going home
Discharge is the most dangerous transition in the whole journey — supports vanish overnight. Plan it like a project, starting at least two weeks before the date. Full guide: What to Ask Before Discharge.
Checklist
- Work through the complete discharge question list with the care team — who manages bladder, bowel, skin, meds, equipment, and follow-ups after you leave.
- Order equipment early — wheelchairs and cushions can take weeks; insurance denials take longer. (Equipment guide.)
- Get home modifications started: ramp, doorway widths, bathroom. (Home modifications · accessible housing.)
- Schedule follow-ups before leaving: physiatrist, urology, primary care — get dates on a calendar, not "call later."
- Fill every prescription before discharge day, and confirm who refills them after.
- Confirm caregiver training happened: transfers, skin checks, catheter care, bowel program, AD response.
- Build your emergency plan: Emergency Preparedness After SCI.
- Start benefits paperwork now if you haven't — SSDI/SSI take months. (Disability & Benefits guide.)
The first weeks home
- Daily skin checks, no exceptions — pressure injuries are the #1 preventable readmission.
- Keep the bladder/bowel logs from the packet — patterns are how you and your team troubleshoot.
- Know your two emergencies cold: autonomic dysreflexia and blood clots.
- Expect a mental dip when the structure of rehab disappears. It's normal, it's common, and it's treatable: mental health after SCI.
Family & caregivers
You're not a visitor in this — you're part of the care team, and your stamina is a medical resource that needs protecting. Full hub: Caregiver Hub.
Checklist
- Pick one spokesperson for medical updates; rotate hospital shifts so no one burns out in week one.
- Say yes to specific offers of help: meals, rides, laundry, childcare. Keep a list of what people can do.
- Demand hands-on training before discharge: transfers, skin inspection, catheter care, bowel program, AD response. Practice with supervision until you're confident. (Training guide.)
- Learn body mechanics now — caregiver back injuries are epidemic. (Protecting your body.)
- Ask about being paid as a family caregiver through Medicaid waiver programs — most families don't know this exists. (How it works · Benefits hub.)
- Get the survivor connected to peers who've lived it — and get yourself a caregiver community too: our caregiver forum.
What nobody tells families
- Grief and hope coexist for months. You can mourn the old life and still believe in the new one.
- Don't do everything for them. Independence is rebuilt one frustrating, slow task at a time — taking over steals the rep.
- Recovery timelines are unknowable, even to the doctors (an honest look at prognosis). Beware anyone selling certainty — in either direction. (Miracle-cure warning signs.)
- Your own checkups, sleep, and mental health are not luxuries. A collapsed caregiver is the fastest route to a nursing home placement nobody wants.
Red flags for the person you care for
Three things to do today, whatever stage you're in
- Print the First 30 Days Packet and start the contact sheet.
- Read the one emergency everyone must know: autonomic dysreflexia.
- Say hello in the Newly Injured forum — no question is too basic.
SCI.help articles are information, not medical advice. Practice varies by injury level, provider, and institution — always confirm specifics with your own care team.
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