Patients and families with tracheostomy live each day with a trach and often become experts in management. Some patients have provided tracheostomy tips to help in the day to day life of living with a tracheostomy.
Tracheostomy Tips for Getting Help
Teach your tribe about your trachie! It truly takes a village! As long as the village is willing to suction, change a trach, do trach ties! You’re good to go! We are not in this world alone! Lean on your people! You were braced with so much information when you came home with your child.
The same way they built and trained armies of amazing NICU/PICU nurses to run in and help your baby in emergencies! Build your team! Aunts, uncles, grandparents and friends! Will make the journey worth while! Give them the benefit of the doubt!
Normalize this aspect of life!! And live your life! Trach/vent/o2 dependent life TO THE FULLEST!! Put the vent on your back! Carry your little one and each one of your family will be responsible for other equipment!
Tracheostomy Tips for Organization
What Do You Say to People Who Ask Questions About Your Child with Tracheostomy
People who have never seen a tracheostomy may stare or ask questions about the tracheostomy tube. One mother has provided a hand out on card stock to provide information to others that do not understand.
Tracheostomy Tips for Cleaning the Tracheostomy Tube
Things you wish you knew about tracheostomy
- Learn how to change the trach ties BY YOURSELF before you leave the hospital
- When you change your child’s trach, remember that their heart doesn’t stop when you take it out. It’s ok to breath when you’re doing a change, they won’t die.
- Know your waters: sterile, filtered, and tap water all do different things.
- When in doubt, change it out. If your child has thick secretions, or if they have a cold, change their trach.
- Ask all the questions, educate everyone.
- If your child is in the hospital for a procedure, YOU are their top specialist. YOU are in charge. YOU have more education about your child than any of the medical professionals. Own that.
- Take a deep breath. Taking care of a human with a trach is tough.
- Get a small travel oxygen tank. It’s so much more convenient.
- Never leave home without your suction machine or your emergency trach bag.
These are suggestions from patients and families with tracheostomy and should not take the place of medical advice.