Clinical Hub,Patient Education,Health and Nutrition Facts For You,Pediatrics, Parenting

Elective Tracheostomy Surgery for a Child with a Neuromuscular Disorder (7694)

Elective Tracheostomy Surgery for a Child with a Neuromuscular Disorder (7694) - Clinical Hub, Patient Education, Health and Nutrition Facts For You, Pediatrics, Parenting


Choosing a Tracheostomy for a Child
with a Neuromuscular Disorder

This handout explains what a tracheostomy
is and can help you decide if this is right for
your child.

What is a tracheostomy?
Surgery is done to make an opening in your
child’s neck called a stoma. The stoma goes
to the windpipe (trachea). A tracheostomy
(trach) tube is put in the stoma to help your
child breathe. Your child breathes through
the trach instead of their nose or mouth.

How do I decide?
You meet with members of the pulmonary
and palliative care teams to talk about the
pros and cons of a tracheostomy. These
ξ Changes to your child’s health
ξ Life style changes such as adding
more equipment
ξ Need for home care nursing

This is your choice. Take time to think about
the quality of life and the things your child
likes to do. Ask yourself how a
tracheostomy may change these things. We
support your choice.

If you would like to know what you need to
learn to care for a child with a tracheostomy
go to our website www.uwppc.org
ξ Click on Educational Resources.
ξ Click on Self Study Modules.
ξ Click on Pediatric Tracheostomy
and Ventilator Care.

This website is used to train caregivers
about tracheostomy and ventilator (vent)
The amount of time it takes to prepare
families to go home varies. It depends on:
ξ How much time you have for
ξ Your child’s health
ξ Insurance issues
ξ If respiratory equipment is

If you choose a tracheostomy for your child,
our team helps you get ready. Our team is
made up of:
ξ Pulmonary doctor
ξ Advanced practice nurse (APN)
ξ Respiratory therapist (RT)
ξ Nurses and your child’s primary
ξ Child life specialist
ξ Social worker
ξ Case manager
ξ RT Discharge planner

How does surgery get scheduled?
The pediatric pulmonary doctor refers your
child to the pediatric ear, nose and throat
(ENT) doctors. You meet them in clinic or
the day before surgery. Surgery is set based
on your schedule, and the doctor’s schedule.

What do I need to do before surgery?
1. Decide who will be trained
ξ At least two caregivers need to
learn all of your child’s care.
ξ Anyone who cares for your child
alone must complete the whole
training process. Other family
members that help you at home
may also get trained.
ξ Schedule classroom training
sessions with the Pediatric
Pulmonary Clinical Nurse

2. Decide how many nursing hours
are needed in your home to help
with the care of your child
ξ It is best to set up nursing
coverage before surgery is
scheduled to prevent delays in
ξ Insurance may cover in home
nurses when caregivers are
sleeping, working, and a few
hours each week for errands. It is
also based on your child’s
medical needs. Please check with
your insurance provider.
ξ Your options of using a nursing
agency or independent home
nurses are based on where you
live, and insurance coverage.
ξ The clinic case manager can help
you set up in home nursing. The
case manager can be reached at
ξ If you already have independent
nurses, they need to be pediatric
tracheostomy and vent certified
to care for your child with a
tracheostomy. This is done at the
state level and can take many
ξ We recommend that personal
care workers or certified nursing
assistants (CNAs) are not left
alone with your child with a
3. Meet with your home equipment
provider to get any new equipment
and learn how to use it. Equipment
and supplies will be ordered from
your home equipment provider.

The Day Before Surgery
The day before surgery is very busy. Plan to
go to the AFCH universal care unit the night
before surgery. An IV is placed in your child
for nutrition and to stay hydrated. You meet
with many team members, such as a child
life specialist, the ENT surgeon and a team
member from anesthesia. It is important that
you bring all current and new supplies. This
includes your child’s:
ξ Vent
ξ Suction machine
ξ Cough assist machine
ξ Feeding pump
ξ Stroller or wheel chair
ξ New equipment or supplies that
have been ordered before surgery
ξ Communication device
ξ List of medicines
ξ Information about and supplies
for your child’s feeding routine

The Day of Surgery
Your child is taken to the 3rd floor of AFCH
for surgery on the home vent. The AFCH
staff lets you know where to wait during
surgery and when you can be with your
child. After surgery, your child is moved to
the Pediatric Intensive Care Unit (PICU).
Your child is on a vent after surgery and has
a cuffed trach tube in place with black
strings (sutures) taped to their chest.

After Surgery - Days 1-3
Your child stays in the PICU and is watched
closely. Feedings and medicines are
restarted as tolerated. The home vent is also
restarted with settings adjusted as needed.
The sutures stay taped to your child’s chest
and the trach ties are not changed. Staff
suction your child’s trach tube often to keep
it clear of mucus. Airway clearance
therapies are given as needed. On Day 3, the
ENT doctors do the first trach tube change at
your child’s bedside and take out the sutures
taped to your child’s chest. After this, we
would like you to be part of your child’s
cares. This included suctioning routine
stoma care, trach tie changes and trach tube

After Surgery – Day 4 Until Discharge
After the first trach tube change, your child
moves from the PICU to the Universal Care
Unit and is cared for by the pulmonary team.
The size and type of trach tube, vent settings

and vent circuit is decided by the pulmonary
ξ A travel humidification plan is
developed using an in-line heat
moisture exchanger (HME) also
called an artificial nose.
ξ Caregivers complete training
sessions in a classroom setting
outside your child’s room.
ξ If you do not want to leave your
child in the care of the AFCH
staff during these classroom
sessions, arrange for someone
who you trust to care for your
child. This needs to be someone
who is not part of the training
process because all caregivers are
trained at the same time.
ξ Training sessions are scheduled
with the Pediatric Pulmonary
Tracheostomy Coordinator.
There are about 8 hours of
classroom training.
ξ The classroom training includes
learning from the manual: Caring
for Your Child’s Tracheostomy
and demonstration and practice
of skills on a doll with a
Topics include:
o Caring for your child’s trach
tube, stoma and tie changes
o Humidification with the trach
o How to suction your child’s
trach tube
o How to change the trach tube
o Vent terms and settings
o Emergency care and CPR for
a child with a tracheostomy
o How to use the manual
resuscitation bag
o How to put together all of the
supplies needed for the “Go
bag” for the tracheostomy
ξ After classroom training each
o Practices the skills on your
child with coaching from the
nurses. You can practice
skills anytime you are here
with your child.
o Completes three trach tube
changes before discharge
o Completes CPR training for a
child with a tracheostomy
with AFCH staff. Your nurse
will help you schedule this
o Is taught any changes in your
child’s care and has a chance
to practice them before
o Is taught how to use any new
equipment by provider. This
person will provide any new
supplies needed,

Independent Care Sessions
ξ Each caregiver successfully
completes 24 hours of
independent care after all the
training is complete.
o These need to be scheduled
in advance
o Your home equipment is used
for the independent care
o It gives each caregiver time
to be totally responsible for
the care of your child, your
child’s home equipment, and
trouble- shooting any issues
that come up, using AFCH
staff as back up.
o It allows each caregiver to
demonstrate caring for your
child independently. It is not
a test. It is a way to pull
together all you have learned
and practice doing all of your
child’s daily cares within the
safety of AFCH.
o If there are areas that need
more class time or practice,
you have time for that after
the session.

o This is not a marathon. If you
like, you can break down the
session into two twelve hour,
or three eight hour blocks.
The goal is to experience
your child’s care needs across
a 24- hour day.
ξ A trained care provider must
be with your child at all times.
o During the session you may
take your child out of the
room. You need to stay on
the unit to be close to a
trained care provider until
you are fully trained.
ξ After you complete your
independent care session you
can take your child off the unit
within AFCHYou must have
your child’s “Go bag” with
your child at all times and you
need to be able to:
o Use the home equipment
o Do trach care
o Suction and change a trach
o Do CPR and the emergency

Road trip
Once you complete your independent care
session you take your child out of the
hospital on pass before discharge. This
includes getting your child ready to ride in
your car. If needed, we have a car seat
specialist to help you make sure your child
can safely ride in your car.

What else needs to happen?
ξ We let your primary care
doctor know that your child
now has a tracheostomy.
ξ Financial resources are
arranged in your community.
Home care equipment and home
nursing often need to be
approved before your child can
go home. Your child’s case
manager and social worker work
together with you to coordinate
the available resources.
ξ We work with you to set up
home care nursing services.
Your child’s case manager talks
with the home care nursing
provider you chose to give
information for the plan of care.
It is then sent to the state
Medicaid office. It may take
several weeks to get approval for
financial coverage for the needed
nursing services.
ξ Local services are identified
and contacted before discharge
to provide home or community
based care after your child goes
home. Services may include
speech, physical, and
occupational therapy, community
social services, or contacts with
local school staff. These services
often include Birth to Three, or
Early Childhood.
ξ We would like you to let your
local emergency staff and
utility company know that
there is a child in the
community who has a
tracheostomy. This gives
emergency staff a chance to learn
more about your child in the case
of an emergency, and for your
utility company to be aware of
your child’s needs in the case of
a power outage.
ξ The discharge date is set and
approved by all involved;
family, pulmonary team, home
equipment provider, home
nursing, and community service

Follow up is at the AFCH, neuromuscular
and trach clinic
ξ You have been to the pulmonary
and the neuromuscular clinics.
ξ The Trach Clinic is held monthly
on a Thursday afternoon. It is

staffed by one of the pediatric
pulmonary and ear, nose and
throat doctors. You will also
meet with the advanced practice
nurse, nutritionist, social worker,
speech therapist, and respiratory
ξ The trach clinic lasts at least two
hours because of the number of
people to see your child..
ξ Our goal is for you to come
totrach clinic at least once a year.

If you have questions you can reach any
member of the pulmonary team by calling

Your health care team may have given you this information as part of your care. If so, please use it and call if you
have any questions. If this information was not given to you as part of your care, please check with your doctor. This
is not medical advice. This is not to be used for diagnosis or treatment of any medical condition. Because each
person’s health needs are different, you should talk with your doctor or others on your health care team when using
this information. If you have an emergency, please call 911. Copyright © 12/2017 University of Wisconsin Hospitals
and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#7694