Bringing a child home with a tracheostomy (a “trach”) can feel overwhelming. A trach is a small tube placed through an opening in the neck, called a stoma, straight into the windpipe. It lets your child breathe, but it also skips the nose and mouth, which normally warm, filter, and moisten the air.
With good training, a ready go-bag, and the right help at home, many families settle into a routine. Here’s what to know, including the programs in California that can help pay for care.
At a glance
Trach care at home, in plain words
- Get trained firstBefore discharge, practice suctioning, tie changes, tube changes, and CPR until you feel ready. Train a backup caregiver too.
- The go-bag goes everywhereSpare trachs (same size and one size smaller), suction, and supplies stay with your child at all times.
- Help is availableIHSS can pay for trach care as a paramedical service, and Medi-Cal may cover in-home nursing.
This guide is general information. Always follow the care plan and training from your child’s medical team.
Before you leave the hospital
- Practice every skill with a nurse until you can do it calmly: suctioning, cleaning the stoma, changing ties, and changing the trach.
- Take a CPR class, and ask the team to show you rescue breathing for a child with a trach.
- Train at least one other adult, like a partner, relative, or IHSS provider. Nobody can do this alone, day and night.
- Get the care plan in writing: trach brand and size, backup size, suction depth, and how often to change ties and the trach.
- Make sure your supply company has delivered equipment, and ask about home nursing, before discharge.
For children on a home ventilator, the American Thoracic Society recommends an awake, trained caregiver in the home at all times and at least two trained family caregivers. Ask your child’s team what level of watching your child needs.
Daily care basics
- Wash your hands before touching the trach or supplies. At home, “clean” technique is usually enough; your team will tell you when to use sterile supplies.
- Clean the skin around the trach at least once a day, and check for redness or soreness.
- Keep ties snug: you should fit one small finger between the tie and your child’s neck.
- Keep the air moist with an HME (a small filter some families call a “nose”), a humidifier, or a trach mask, as prescribed. Dry air thickens mucus and can block the tube.
- Suction when you hear or see mucus or your child is working to breathe, and only to the depth your team taught you.
- If your child has a pulse oximeter, use it during sleep, naps, and any time they’re not being watched.
- Change and clean trachs on the schedule your team gives you, and follow the manufacturer’s cleaning instructions.
The go-bag goes everywhere
Your child’s emergency kit, or go-bag, should be with them at all times: in the bedroom, the car, the stroller, and at school. Many families keep more than one. Check it every day and after every trach change.
Daily go-bag check
Check the bag every day and after every trach change. Tick what’s in the bag and ready. Anything missing shows up below. Checks clear at midnight so you start fresh each day, and they stay on this device only.
Based on go-bag lists from SickKids (AboutKidsHealth) and Boston Children’s Hospital. Your child’s team may add or remove items; their list comes first.
Know the signs of trouble
A blocked trach is an emergency. Watch for:
- Your child looks scared or upset, or grabs at the trach
- A whistling sound from the trach
- Pale, gray, or blue skin
- Coughing that doesn’t clear the tube
- The chest doesn’t rise with each breath
- The ventilator alarms
Try suctioning first. If the catheter won’t pass or your child still can’t breathe, change the trach right away. Don’t wait.
Flag: call 911 if
- The trach comes out and you can’t get a new one in, even one size smaller
- Your child’s color stays pale, gray, or blue after a trach change
- Your child isn’t breathing, or you have to breathe for them
- Bright red bleeding from the trach that doesn’t fade to pink, or bleeding with trouble breathing
Start the emergency steps you were trained in right away. If someone else is with you, have them call while you work.
Make an emergency info card
Paramedics, ER staff, babysitters, and teachers need your child’s trach details fast. Fill in the card below once, print it, and keep copies in the go-bag and on the fridge.
Emergency info card
Fill this in once, print it, and keep a copy in the go-bag, on the fridge, and with any caregiver or school. Paramedics need these details fast. What you type stays on this device only.
Copy trach sizes and suction depth exactly from your discharge papers or your child’s team. Update the card after every size change.
Everyday life with a trach
- Bath time: keep water out of the trach. A shallow tub, sponge bath, or handheld shower works. If an HME gets wet, throw it away.
- No swimming, and never let your child go under water.
- Watch young children during play so they don’t pull at the trach or push small objects into it. Stay close at meals, too.
- Skip contact sports like football.
- Keep the home smoke-free. People who smoke outside should change clothes before holding your child.
- Everyone in the home should get a yearly flu shot.
- Speaking valves can help many children talk. Use one only when your child’s team says it’s safe, and never while your child sleeps.
Need a break? Read Understanding Respite Care: A Guide for Family Caregivers.
Plan for power outages
Suction machines, ventilators, and humidifiers need power. Keep batteries charged, know how long each one lasts, and keep backup manual suction in the go-bag. Let your utility know a child in your home depends on medical equipment.
Worth knowingIf your child uses powered equipment like a suction machine, ventilator, oxygen concentrator, or heated humidifier, ask your utility about the Medical Baseline program. It gives extra energy at the lowest rate and can sign you up for advance notice of certain outages. Learn about Medical Baseline
For a full plan, read Preparing Californians with Disabilities for Unexpected Natural Disasters.
Getting help at home
IHSS can pay a trained provider, including a parent in many cases, for hands-on care. Trach care and suctioning fall under paramedical services. See What Does IHSS Cover?.
Worth knowingTrach care and suctioning count as paramedical services in IHSS. Your child’s doctor or another licensed health care professional fills out and signs form SOC 321, sets how much time the tasks take, and makes sure the provider is trained. You sign it too. Parents who are their child’s IHSS provider can be paid for paramedical tasks. The county can’t pay for these hours until it has the signed form.
FlagMany families expect IHSS protective supervision to cover watching a child with a trach around the clock. It usually won’t. Protective supervision isn’t authorized when the need comes from a medical condition and the supervision needed is medical, or just in case of a medical emergency. A child with a trach may still qualify if they also have a mental or cognitive impairment that keeps them from understanding danger. For round-the-clock medical watching, ask about in-home nursing instead.
Other help to ask about:
- In-home nursing through Medi-Cal. Children and young adults under 21 on Medi-Cal can get private duty nursing at home from an RN or LVN when it’s medically necessary. Your Medi-Cal plan, or California Children’s Services (CCS) if it authorized the care, arranges it. Finding enough nurses can be hard; if approved hours go unfilled, tell your plan.
- The HCBA waiver. This Medi-Cal program can add nursing and case management for people of any age who would otherwise need hospital or nursing facility care. There’s often a waitlist, but people under 21 get priority, so apply early.
- California Children’s Services. CCS covers care for children with certain serious conditions. Read California Children’s Services.
- Your regional center. If your child has a developmental disability, the regional center may help with respite and other services. If they say no, read the regional center appeal guide.
Want the full picture? Read A Parent’s Guide to California’s Support System for Children with Disabilities and How to Advocate for More IHSS Hours. Looking for a trained backup caregiver? Search caregivers on IHSS Connect for free.
At school
Your child has a right to go to school with a trach. In 1999, the U.S. Supreme Court ruled that public schools must provide the nursing care a student needs during the school day, including trach suctioning. Put your child’s trach care, emergency plan, and trained staff in their IEP or health plan, and send a go-bag and a copy of the emergency card.
Read more
More guides from IHSS Connect
- A G-Tube Is Not Giving Up, It’s Giving Your Child What They Need
- IHSS Paramedical Services: What Counties Don’t Always Clearly Explain to Families
- What IHSS Does Not Cover, and What to Do About the Gaps
- The IHSS Reality Check: What Actually Qualifies for Hours
- WPCS for Adults: A Guide to Waiver Personal Care Services
- CareReady: Free Emergency Care Packet Builder for Caregivers & Families
Sources
- UC Davis Children’s Hospital — Pediatric Tracheostomy: Care at HomeHumidification, bathing, no swimming, supervision during play and meals, trained aide at school, smoke exposure, speaking valves
- UC Davis Children’s Hospital — Pediatric Tracheostomy: Emergency CareSigns of a blocked trach; when to change the tube; when to call 911
- UC Davis Children’s Hospital — Pediatric Tracheostomy: ComplicationsMucus plugs, accidental removal, bleeding; when to call 911
- Boston Children’s Hospital — Care of the Tracheostomy Site (PDF)Clean the site at least once a day; one small finger under the ties; two spare trachs; oximeter during sleep or when alone
- SickKids (AboutKidsHealth) — The Emergency Tracheostomy KitGo-bag contents; keep it with the child; check daily and after each tube change
- American Thoracic Society — Pediatric Chronic Home Invasive Ventilation guideline (2016)For children on home ventilators: awake trained caregiver, at least two trained family caregivers, pulse oximetry
- CDSS — IHSS Paramedical Services fact sheet (PDF)Suctioning is a paramedical service; doctor completes the form and trains the provider
- Disability Rights California — Paramedical Services Through the IHSS ProgramSOC 321; trach care and deep suctioning; health professional sets time; parent providers
- Los Angeles County DPSS — IHSS Protective Supervision policyWhen protective supervision is not authorized, including medical supervision
- DHCS — All Plan Letter 20-012: Private Duty Nursing for members under 21 (PDF)In-home nursing by an RN or LVN under the EPSDT benefit; plan case management
- Disability Rights California — The HCB Alternatives WaiverEligibility, private duty nursing, waitlist and priority for people under 21
- California Public Utilities Commission — Medical BaselineExtra energy at the lowest rate; outage notices
- U.S. Supreme Court — Cedar Rapids Community School District v. Garret F. (1999)Schools must provide nursing services a student needs during the school day, including trach suctioning
Care guidance comes from children’s hospital family education materials and a professional medical society guideline. Program rules come from California agencies and Disability Rights California. We don’t recommend specific products, brands, or suppliers.
About this article
This guide helps California families care for a child with a tracheostomy at home: daily care, emergencies, everyday life, and the programs that can help pay for care. It’s an update of our 2024 guide, with added safety, emergency, and program information.
Care guidance comes from children’s hospital education materials and the American Thoracic Society. It is general information, not medical advice, and it doesn’t replace hands-on training from your child’s medical team. IHSS Connect is an independent, free registry for families and caregivers. We are not part of any state agency or county.
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