There are a few scenarios in which your child may need a tracheotomy, such as a traumatic injury, a chronic illness, or as a premature infant transitioning from a ventilator. Regardless of the reason, if you’re considering a tracheotomy for your child, the idea can seem overwhelming.
A tracheotomy is a surgical procedure where a tube is placed into your child’s trachea, or windpipe, to either bypass a blockage in the airway, assist a child who cannot cough out mucus from the lungs, or assist patients who need to be on a ventilator for a long period of time.
If you’re beginning this journey, it is important to ensure that you’re receiving all of the resources you need to care for your child at home – before you leave the hospital. As a nurse practitioner who is part of the care team preparing families for home, I have noticed that it is the parents who are the most hands on and jump into learning quickly that are the most comfortable at home and have the best long-term outcomes.
Here are a some tips to help you, your child, and your family become comfortable with the tracheotomy as you transition to home care:
Be prepared for what the tracheotomy will look like on your child. Uncertainty about what a tracheotomy will look like on their child is one of the most common concerns we receive from parents before the procedure. If you know what to expect ahead of time it will go a long way to helping ease anxiety. We have a tracheotomy doll that we use to help parents and siblings visualize what it will look like.
Learn as much as you can. We offer a Tracheotomy Care Handbook for parents, which walks them through every step of every procedure they will need to perform at home. It also includes emergency care tips, equipment needs and other resources.
Get hands on. Parents and/or caregivers will need to demonstrate they know how to care for the tracheotomy before leaving the hospital. However, the earlier and more actively you participate in the care of your child while in the hospital, the more comfortable you will feel doing it at home.
Have a plan for home. A social worker and discharge planner will help you make plans for home equipment and supplies. They will also work with your insurance company to determine if nursing care is a benefit and what is covered under your plan.
Ask questions. Lots of them. We want to know what your concerns are so that we can help you feel comfortable caring for your child at home. In addition to wanting to understand the day-to-day care requirements of a tracheotomy, parents also want to know if their child will eventually be able to talk. The short answer is that it really depends upon your child’s situation, anatomy, and condition. Down the road we may recommend that your child have a speaking valve assessment to determine if he or she is a candidate to assist with vocalizing.
Connect with other parents. Having the opportunity to connect with and relate to other parents who have gone through the same thing is invaluable. Please be cautious that there is a lot of misinformation out there as you’re looking for information and support online. If you have any questions about your child’s tracheotomy care that might be different from what we’ve recommended, contact us and we’ll be happy to discuss it with you.
Facing the possibility of a tracheotomy can be understandably overwhelming for parents. It requires special care 24 hours a day and the length of time children typically have them depends upon the child and condition that they have. Arming yourself with information and being as prepared as possible will help you and your child be more comfortable and transition smoothly to home care.
