Bringing home trach vent child v2014 v01pdf

Dedication
This guide is dedicated to the following people:
Glenn Gleason (R.I.P., 1968 – 2009), following your lead of paying it forward,
Lisa and Georges Scrivens, for all of their love and support,
Our son, John, for teaching us about love, acceptance, and something new about ourselves,
And to all the future families and caregivers of trach/vent children, may you learn something here to
make your life a little easier and more enjoyable….
The information included in this guide is for educational purposes only. It is neither intended nor implied to
be a substitute for professional medical advice. The reader should always consult his or her healthcare
provider to determine the appropriateness of the information for his or her own situation or if he or she has
any questions regarding a medical condition or treatment plan. [Reading the information in this guide does
©2014 Laura Elliott
not create a physician-patient relationship.]

Table of Contents
Introduction………………………………………………………………………………………………..i
NICU Poem…………………………………………………………………………………………………ii
Federal & State Assistance Programs………………………………………………………….01
Equipment and Supplies…………………………………………………………………………… 02
Trach Care……………………………………………………………………………………….……….. 03
G-Tube Care………………………………………………………………………………………………04
Home Care Nursing…………………………………………………………………………………… 05
Organizing “Everything”…………………………………………………………………………….06
Emergency Preparedness…………………………………………………………………………..07
Travelling with Your Child…………………………………………………….…………………… 08
Insurance…………………………………………………………………………………………………..09
Resources………………………………………………………………………………………………….10
Homecoming Preparation………………………………………………………………………….11

Introduction
Our journey began on Thursday, December 28, 2006, during our 12 week ultrasound. It was at
that appointment we discovered this would not be a normal, healthy pregnancy. After
multiple ultrasounds and other tests, doctors still could not figure out why they were seeing
what they were seeing. On April 26, 2007, I was hospitalized and put on bed rest for 24 hour
monitoring (our son was not growing).
On May 3, 2007, our son, John, was born by emergency C-section due to fetal distress, at 29
weeks, weighing 2 lbs, 9.6 oz. He was born with multiple congenital defects like a cleft
palette, short fingers, and an eventration in the diaphragm. There were growing concerns
about his eye sight (cloudy corneas) so he was transported the following day to A.I. duPont
Hospital for Children in Wilmington, DE.
It was a wonderful day on Sunday, May 13, 2007. It was Mother’s Day and we were able to
hold John for the very first time. He appeared to be stabilizing and the decision was made to
extubate John in the operating room the following day. Little did we know about the
nightmare ahead of us the next day.
During the extubation on Monday, May 14, 2007, John suffered a pulmonary hemorrhage.
Most preemies do not survive pulmonary hemorrhages but John did. He began to stabilize
but it was clear at that point John was going to be on a ventilator for an extended period of
time. Therefore, on Friday, May 18, 2007, John had his trach surgery.
From May 18, 2007, until August 28, 2007, we learned from the respiratory team and NICU
nurses how to care for our trached and vented son: suctioning the trach, performing trach
care, changing trachs and trach ties, etc. We were very prepared to take care of our son.
While it’s wonderful having your trach/vent child home, the home environment provides its
own set of challenges. Your child’s airway is the # 1 priority now. That means other priorities
like social activities, relationships, family, and sleep will be sacrificed…a lot. When your night
nurse calls out thirty minutes before their shift, someone will have to stay up all night to
ensure the airway is not compromised, regardless of commitments the next day (ex. work,
errands, family, etc.). It’s hard and it can push you to the edge.
There are a lot of “things” we learned while caring for our trached son. How I wish we would
have known these “things” prior to our discharge. But, guidance and advice on these “things”
could only be provided by another trach/vent parent/caregiver that has been home. And, this
is what drove us to write this guide. This is not a ‘how-to’ guide or a complete list of all
resources. This is a guide that offers our learnings, experiences, challenges, and resources
that were either successful or unsuccessful (and what we changed to make it successful).
And, hopefully, this can make life for you, your family, and your child a little easier, better, and
less stressful.
©2014 Laura Elliott i

Our Poem Given to the A.I. duPont Hospital for Children NICU
on August 28, 2007 (Discharge # 1)
Back on May 4, our little John took flight
Arriving to duPont in the middle of the night.
He arrived just fine, Anna and the others did agree
Then Robin settled him into bed number 3.
I first met Meg and she told us to relax
And just rest our hands on his little back.
On May 14, the pulmonary hemorrhage made us scared,
But you all worked on him and showed us how much you cared.
We were nervous and concerned about John getting a trach,
But Lori promised us it would be a piece of cake.
When Monica had him moved to the back room,
That’s when we really saw him improve.
She taught us how to care for John, like suction,
So now we know how to care for him and function.
We learned so much from the respiratory queen,
Yes, her name is Arlene.
And how we enjoyed the night crew (Jemma/Tina/Kim/Jan),
With all the arts and crafts you all do.
Even though we moved to a nice room in the PICU,
We wished we could have spent a night` in the new NICU.
But John has now grown and on the LTV,
And looking forward to all that he can see.
While I look forward to all the fun,
I’ll never forget what you all have done.
©2014 Laura Elliott ii

1. Federal & State Assistance Programs
Depending on your child’s medical issues (ex. trach), you may be eligible for additional
federal and state funding, mainly Medical Assistance (MA). When we first heard this from
our NICU social worker, we thought, “There is no way we could be eligible for any federal or
state assistance. We make too much money. We can’t possibly need that.” But, states like
Pennsylvania have a “loophole” or a waiver where children with severe disabilities can
qualify, despite the household’s income. Let us tell you, if your child has as many issues as
our son, you will definitely need the assistance.
With the rise in healthcare costs, there are very few insurance plans out there that can cover
the amount of medical expenses your child is going to face. In 2007, our son’s first four
months of NICU bills alone were over $ 1 million. But, think about all the on-going expenses
you now have: equipment purchases/rentals, supplies, nursing, etc.
The most important thing you can do is to get the application process started NOW, once
you know if your family will be eligible. Processes that involve our federal and local
governments take a while….
1.1. Federal Funding
Depending on your child’s medical issues and eligibility, your social worker
may tell you to start applying for Supplemental Security Income (SSI) for your
child. SSI is a federal income supplement program funded by general tax
revenues (not Social Security taxes) to help aged, blind, and disabled people
(adults and children), who have little or no income, and/or provides cash to
meet basic needs for food, clothing, and shelter. The Social Security
Administration has this publication that describes the benefits for children
with disabilities.
If approved, your child will receive a monthly check from the federal
government. But, even more importantly, the SSI approval means the
federal government considers your child “disabled.” And, if the federal
government considers your child disabled, then the state will consider your
child “disabled.” And, if the state considers your child disabled, your child
may be eligible for your state’s MA program, which will be able to help pay
for your child’s home care nursing, equipment, supplies, medications, co-pays,
Source: www.socialsecurity.gov
etc. While we were not as happy as this family to the right gathering all
the paperwork and filling out the application, the end result was well worth
it.
While it’s hard to hear that your child is “disabled,” you need to remember
that this is a label the government puts on your child. We all know our
children are very strong, the biggest fighters, and the most capable of
surpassing any obstacle. And, this is what is needed to continue the best
support for your child.
Supplemental Security
Income (SSI)
©2014 Laura Elliott 01-01

1.1. Federal Funding (cont’d)
Once approved, your child will receive SSI income. Depending on your family’s income,
once your child leaves the hospital, your child may no longer be eligible for SSI so make
sure you are familiar with the eligibility requirements.
1.2. State Funding
Depending on your state, you may be able to apply for the state MA in parallel to the SSI
application. But, as soon as you receive the SSI approval, you need to make sure you update
the state MA application, stating that you received SSI approval. Since each state has a
different process and eligibility requirements, we won’t go into further detail here.
The part of MA that will be most important to you is the insurance. Whatever your primary
insurance (if you have it) doesn’t cover, MA will then cover/assist with the remaining
balances. Many states are changing their MA guidelines so it’s difficult to specify what MA
will cover fully. For example, the state of Pennsylvania has been considering co-pays or
premiums for some equipment/supplies, prescriptions, and services. You will want to be
familiar with your state’s MA guidelines, as well as continue to monitor any changes to them.
Once you are approved for MA, your state may have several MA insurance plans offered.
Which one do you pick? We asked other parents and our home healthcare agency who they
recommended and that is the plan we selected. Most of these plans, if not all, are HMOs.
Therefore, you will need to do referrals, authorizations, etc. for any appointments, surgeries,
etc.
Once you have MA, you will most likely have to reapply every year. Therefore, keep your
application and any associated documentation (ex. paystubs) so that you can refer to it for
future renewals.

1.3. Early Intervention
Depending on your child’s medical issues, your child may be eligible for your
state’s/county’s/municipality’s Early Intervention (EI) program (dependent on where you
live). These are early childhood intervention programs that are funded by the state and
local governments that address any delays in development so that your child will not
need services later on.
In order to find out if your child is eligible for this program, contact your social worker or
pediatrician who should be familiar with the eligibility requirements. Eligibility
requirements usually include: genetic disorders, low birth weight, chronic illness,
developmental delays, etc. The social worker can help coordinate the appropriate
doctors’ paperwork for the early intervention referral, and ensure it’s submitted to the
appropriate municipality.
While the early intervention process differs based on where you live, the process will
follow something similar to this:
• Once your local municipality receives the referral, an EI
representative will contact you about scheduling an evaluation
with therapists to determine which services your child should
receive, their frequency, and location for these services.
• During this evaluation, you want to provide as much input
about your child at this meeting to ensure your child receives
(1) the proper therapy and (2) the proper amount of therapy.
Remember, you are your child’s best advocate so if you do not
agree with them, you can push harder and bring up more
points to ensure your child gets the therapies s/he needs.
Therapists will also evaluate your child during this evaluation.
The outcome of this evaluation will be your child’s
development plan, or Individualized Family Services Plan
(IFSP), stating which services (ex. therapies) your child will
receive, their frequency, etc.
• Once the EI representative puts together the IFSP, you can
review and sign it. It’s important to know services cannot
start until you sign the IFSP.

1.3. Early Intervention (cont’d)
• Once signed, your EI representative will find the therapists to
work with your child. Since it’s not always realistic to travel
with your trach/vent child, you should not have to travel for
your child’s therapies – you can request to have the therapies
done in the home. Or, if you think it’s best for your child to
have therapy outside the home, you can work with the
therapist(s) to go to different locations, like the playground,
local YMCA, etc.
• The therapists will call you to schedule the therapies.
If you ever have any concerns about your child’s therapists (ex. always late, not doing
what you expect), then you need to contact your EI representative. Your EI
representative can work with you on the proper resolution (ex. getting a new therapist,
talking to therapist, etc.).
Some of the therapies your child might qualify for include:
• Physical Therapy: Promote and maximize movement
potential.
• Occupational Therapy: Promote ability to perform various
activities of life, like socializing and playing.
• Speech Therapy: Promote communication skills. This may be
vocal communication or other types of communication (ex.
signing, communication devices). This can also include feeding
therapy for any feeding problems, which can be a concern for
trach/vent children.
• Vision Therapy: Promote vision skills.
• Hearing Therapy: Promote hearing skills.
• Special Education Teacher: Promotes different strategies for
development in areas of need like behavior, interactions, (ex.
play), communication, etc.
• Social Work: While this is not a therapy in itself, you can ask
for a social worker to help you with some specific tasks, like
looking into school programs for your child, daycare,
equipment, grants, etc.

1.3. Early Intervention (cont’d)
Besides the EI service(s), you may want to take advantage of other therapies offered in
your community. These therapies will most likely have a financial cost so it will be up to
you to determine whether it’s appropriate for your child with respect to your financial
situation. Our son also takes hippotherapy (uses movement of a horse for motor and
sensory input) and sensory therapy through a local barn (tailored for children with
disabilities – uses animals, and other activities for therapy). There are many different
ways to find out about these other therapies, including:
• Other parents
• Internet (see Resources)
• School
• Daycare programs
• Trade shows
• Special needs magazines
• ARC
• EI Case Manager
• Social Worker
• Fairs/Festivals
• Variety - The Children’s
Charity
Source: www.springbrook-farm.org

2. Equipment and Supplies
While it’s exciting to have your child home from the hospital, it also leads to one of the biggest
adjustments as a parent/caregiver of a trach/vent child: you now have a limited inventory of
equipment and supplies (based on your insurance, equipment/supplies provided by your
Durable Medical Equipment (DME) company). Most of the time, you will have enough
supplies to care for your child but there will be times (ex. when child is sick, might use more
suction catheters than normal) when you may not. And, you want to prepare for these times
now to ensure your child is not put at risk.
Let’s first review the equipment and supplies you will have in the home with you to take care
of your child. These lists may not be exactly the same as what you may receive but it will be
similar, which will give you an idea of what equipment/supplies you will have in the home to
support your child.
A fair number of trach/vent children have some sort of feeding tube (ex. g-tube, or g-j tube).
Our son has a g-tube. Therefore, a list of g-tube equipment/supplies is also included in this
section to give you an idea of what equipment/supplies you will have in the home with a
feeding tube. But, if your child does not have a g-tube, ignore those specific sections.
2.1. Home Equipment - Trach
Equipment Purpose Picture
Batteries (2) To use in case of power loss or travel
IV pole To hold the ventilator and other
equipment (ex. feeding pump)
Nebulizer Machine To deliver inhalation medication to
your child (ex. bronchodilator,
steroids)
Oxygen Concentrator To supply oxygen (if necessary) to
maintain oxygen saturation levels
Oxygen Tanks (including
regulator)
To supply oxygen to child while away
from oxygen concentrator or
oxygenating after suctioning
Oxygen Tubing To connect the oxygen source to the
device (ex. ventilator, cannula)
providing oxygen to the child

Pulse Ox To monitor your child’s oxygen
saturation and heart rate
Suction Machine To suction secretions from trach,
nose, mouth, or throat to be used in
the home
Suction Machine – Back
Up
To use in case your primary suction
machine fails
Ventilator - LTV 950
(or another ventilator of
your doctor’s choice, like
Trilogy or Newport, but
this is a common one)
To assist your child’s breathing
Ventilator – Back Up To use in case your primary ventilator
fails
Same as above
2.1. Home Equipment - Trach (cont’d)
There is other prescribed equipment that not necessarily related to the trach but to
underlying pulmonary conditions (ex. BPD).
Some of this equipment might include:
Coughalator
(CoughAssist)
To assist your child to cough in order
to mobilize pulmonary secretions
Percussion Vest To provide airway clearance therapy
for a wide range of chronic lung
conditions

2.2. Home Equipment – G-Tube
Feeding Pump To supply nutrition (ex. formula,
water, etc.) to your child via the
feeding tube at a specific rate and
volume
02-03

2.3. Home Equipment “Lessons Learned”
Here are some key “lessons” we learned with our home equipment:
• Understand All Equipment Operation: The home
equipment is different than the hospital equipment. It’s
important to understand how all the equipment works
because your home care nurses may not necessarily be
familiar with some of the equipment (ex. different models).
Your DME company should provide you an overview of how
the equipment works when the equipment is delivered to
the home. If not, ask for it before your child comes home.
In particular, if you have oxygen tanks, ensure you are
taught how to change the regulator on the oxygen tank. If
you do not change the regulator correctly, the oxygen tank
can go flying and you don’t want to hurt your home,
equipment, much less yourself or your child.
• Keep Equipment Manuals Available: At some point, you
will run into an issue with your equipment that you have
not previously experienced. The troubleshooting sections
are, surprisingly, extremely helpful. We actually resolved
most equipment problems using the manuals. Feeding
Tube Awareness Foundation has a great field guide for the
Moog Infinity Pump (commonly used feeding pump).
• Allow Time for Equipment Set Up: Ensure you allow
plenty of time to have your home equipment set up in your
home. For example, when the DME company comes to set
up the equipment, they will provide some
recommendations on the equipment placement.
Additional powerstrips may be needed, furniture may have
to be moved, etc. It’s possible a circuit breaker change may
be necessary, thus requiring an electrician to perform some
electrical work. Some example electrical requirements for
rooms where the trach/vent child will be include:
 3 prong outlets
 Clearly marked fuse box
 20 amps room (at least)
Most of the trach/vent families I know use a dedicated
circuit for the ventilator.
02-04

2.3. Home Equipment “Lessons Learned” (cont’d)
Here are some key “lessons” we learned with our home equipment: (cont’d)
• Not Like the Hospital Equipment: While the home equipment still supports
your child at home, it’s just not the same as the hospital equipment. For
example, the suction machines used in the home are loud (you can try putting
a blanket underneath them to make them quieter). Therefore, you might
want to follow these tips to better prepare the family for these differences:
 Use the “Quietest” Suction Machine: DeVilbiss (respiratory equipment
manufacturer) introduced a new suction machine in September 2012
that has a 50% reduction in sound (but it’s supposedly heavier). If you
ever heard the previous one, you’d appreciate this sound reduction.
Another noted quiet one is the Medela Clario. But, if you travel a lot
with your child, DeVilbiss’ Vacu-Aide Compact Suction Unit may be a
better option for you. Ask your DME company about them.
 Adjust Alarm Volume: While you still need to ensure you can hear any
alarms, you can turn them down (ex. overnight) so that others in the
home can sleep, play, etc. But, keep the alarms loud enough to hear
them if they go off.
 Use Equipment Prior to Homecoming: This will ensure you know how
to use all your equipment before the child comes home. But, this not
only helps you out, but it also can help out other members of your
family. One of our cats came down with “anxiety” with all the changes
in the home and had to be medicated. While there are no CDs with
“trach/vent” sounds, if you run your equipment in the home prior to
the homecoming, others in the family, including any pets, can start
getting accustomed to the new sounds.
• Electric Bill Increases: After ensuring your ventilator, suction machine,
oxygen concentrator, feeding pump, etc. won’t blow a fuse in your home, it
can definitely burn a hole in your wallet. After you receive your first electric
bill, if you have any concerns about continuing to afford this increase, call
your power company to discuss different payment options (in PA, there are
utility bill assistance programs). If you explain your situation, they may be
able to help you out. Also, you can ask your social worker and other
resources about different organizations that might be able to provide financial
assistance.

2.4. Home Supplies - Trach
Supplies Purpose Quantity*
.5 liter test lung For attaching to end of ventilator
when child is not on ventilator
1
1200 ml gravity bags For holding the distilled water for the
ventilator
8
2x2 IV Sponge Splits** For putting around the trach for
leakage and comfort
1 box (contains 35)
Alcohol prep pads For cleaning parts of ventilator and
home shots (if apply, like Synagis for
RSV)
1 box (contains 200)
Bacteria filters For filtering out bacteria for the
ventilator
8
Distilled water*** For the humidification on ventilator 2
Duoderm For skin abrasions from trach, trach
ties, etc.
1 box (contains 10
sheets)
Gloves For suctioning , changing trach, etc. 6 boxes (box contains
100)
Heated vent circuits For your home ventilator 6
Humidification chambers For moistening the air that goes
through the ventilator
4
Humidifier Moisture
Exchange (HME)****
For attaching to end of trach (if child
is not on ventilator) or used when
travelling with ventilator (away from
humidification chamber)
30
Nasal cannula For administering oxygen through the
nose
4
Nebulizer sets For administering inhalation
medication
4
Omniflex For more flexibility and length with
the trach
8
Oxygen tubing
connections
For connecting multiple sets of
oxygen tubing
4
Palm percussor For chest percussion therapy (PT) 1
Speaking valve
(Passy-Muir valve or
Tracoe)
For redirecting air flow through the
vocal folds, mouth and nose, enabling
voice and improved communication
(if child is not on ventilator)
1

Pulse ox probes For monitoring the oxygen saturation
and heart rate
4
Resuscitation (i.e., ambu)
bag
For providing oxygen to your child
(normally attached to oxygen tank)
1
Resuscitation mask For attaching to resuscitation (ambu)
bag
1
Saline solution For mixing with inhalation
medication, lubrication, etc.
1 box (contains 100)
Scissors (blunt-edge) For cutting trach ties, gauze, etc. 1
Sterile Q-tips For cleaning around trach site 1 box (contains ~ 50)
Sterile water For cleaning around trach site 1 box (contains 100)
Suction catheters (single
For suctioning secretions from trach 300
use, not inline)
Suction collection jar For collecting the secretions 4
Suction tubing For the suction machine (attaches to
the suction canister and suction
machine)
4
Surgilube (or another
type of sterile lubricant)
For lubricating the trach, when
changing
1 box (contains 144
packets)
Trachs Prescribed trach size 2
Trach ties or secures For attaching trach to the child 30
Travel vent circuits For your travel ventilator 4
Yankeur suction handles For suctioning secretions from mouth
and throat
4
2.4. Home Supplies - Trach (cont’d)
• Quantities depend on your insurance. Quantities listed are intended to give you a general idea of
supplies delivered on a monthly basis.
** Many families also use Mepilex sponge pads instead of IV sponges.
*** Distilled water may or may not be covered by insurance.
**** Recommend bow-tie HMEs instead of in-line HME, if child is off the ventilator, due to its smaller
size and two entry points for ventilation. Our son used this one but this one looks better (and friends’
trach/vent kids use it) because of the suction port.
To see pictures of the above supplies, go to Resources (Aaron’s Tracheostomy Page).

Extension Sets For attaching to the g-tube in order to
provide formula, medication, etc.
4-5
Feeding Bags For distribution of the formula or
other liquids into the g-tube via a
feeding pump
30
Formula For providing nutrition to your child Varies per child
G-Tube** (likely a Mic-
For administering all nutrition and
1
Key or Mini)
medications to the child
Syringes*** For administering medication through
the med port on the g-tube, or bolus
feeds through the main port, etc.
Varies but typically a
variety of syringe sizes
2.5. Home Supplies – G-Tube
* Quantities depend on your insurance. Quantities listed are intended to give you a general
idea of supplies delivered on a monthly basis.
** See below picture to understand the difference between a Mic-Key and Mini g-tube button.
*** Recommend slip tip syringes (and catheter tip for 60cc syringe) vs. leur lock. Only use leur
lock if a needle will be used with the syringe. Typically, you will be given enough syringes
assuming they are replaced once a week.
Surgilube, 2x2 IV sponges, and tape are also be used for g-tubes but these supplies are already
supplied due to the trach.
To see pictures of the above supplies, go to Resources (Feeding Tube Awareness).

2.6. Home Supplies - General
There were some other supplies that we bought on our own like:
• Paper Towels: Nurses are required to use paper towels when they
wash their hands (i.e., no hand towels). We buy the huge packs of
paper towels (12 rolls) from BJ’s because we go through them so
quickly (usually around 10 rolls/month).
• 3 oz cups: We use these cups for the sterile water and other
solutions. We also buy these cups from BJ’s and they last a long
time.
• Q-tips (regular size): We often ran out of the long, sterile Q-tips
and regular ones worked just as well. Again, we also go through a
lot of these so we buy them from BJ’s.
• Flexible Clear Tape: We used this tape if we needed to tape the
split gauze together (mainly for g-tube). Your DME company can
most likely provide this.
• Stethoscope: We invested in a good, pediatric stethoscope. We
bought a Littman pediatric stethoscope from www.allheart.com.
While they are not inexpensive, it was important to us to be able
to hear the air movement in his lungs. And, not all of your nurses
may have a stethoscope (ex. most do but may have left it at home,
etc.). You need to be careful that it doesn’t accidentally walk out
of your house with a nurse.
• Little Suckers: The name says it all. These are small attachments
for the suction machine to suck out oral and nasal secretions. We
did buy these on our own but found out later that the DME
company can provide them (a doctor’s script will be needed).
Other families have used Boogie Be Gone attachments.
• Bactroban Ointment: While this is a prescription topical ointment,
it was helpful to have this ointment in the home for trach site
infections. Others use OTC ointments like Neosporin. You can
follow up with your doctor about an appropriate antibacterial
ointment for your child. We had to take our son to the ER on a
Saturday just for a g-tube site skin infection. When we
encountered a trach site infection, we already had this
prescription, which saved us another trip to the hospital.

2.6. Home Supplies - General (cont’d)
There were some other supplies that we bought on our own like
(cont’d):
• Pediatric Face Masks: After our son was discharged from the
hospital in the early fall, it still felt like the hospital was our second
home due to the number of appointments he had. And, every
time we went to an appointment, our son seemed to come home
with a different cold virus. Therefore, we started having him wear
pediatric face masks at the hospital, which dramatically reduced
the colds. We liked the Kimberly-Clark child face masks with
Disney characters from Amazon.
• Disinfecting Wipes: We use the wipes to wipe down all of the
equipment a few times a week. This is especially important if
anyone is sick to prevent further spreading of any viruses.
• Hand Sanitizer: We have hand sanitizer in all bathrooms, and any
room where our son tends to be. Sometimes, “events” happen
where there might not be enough time to wash your hands. If you
can’t wash your hands, hand sanitizer is another good option to kill
germs. We also carry hand sanitizer in our son’s diaper bag and
cars.
• Oxygen Signs: While this is not a specific piece of equipment, if
you will have oxygen tanks in your home, it is recommended to
have ‘oxygen in use’ signs in your windows to ensure no one
smokes or creates an open flame. We did not purchase any signs.
Free signs can be downloaded and printed off from this website.
Or, google ‘oxygen in use’ signs and find an appropriate one to use.

2.7. Home Supplies “Lessons Learned”
Here are some key “lessons” we learned with our home supplies:
• Understand Usage Now: While the child is still in the hospital, take
some time to understand which supplies you use the most (ex.
suction catheters, HMEs, pulse ox probes, etc.) for the child. You will
have a better understanding of where you may fall short on supplies.
• Hoard, Hoard, Hoard: When ordering your monthly supplies, order
ALL of them at the maximum quantity, even if your child is in the
hospital. You do not want to fall short in times of need, like
weekends or the winter. After a few months, if you find there are
some supplies where you don’t need the maximum quantity, then
you can decide whether to order less than the maximum going
forward.
• Typical Supply Shortages: These were the supplies where the
monthly allotments (defined by insurance) were never enough for
us:
 Suction Catheters: Especially during the winter (ex. colds,
sicknesses), suction catheters were a scarce commodity.
(our son had a lot of secretions)
 Gloves: We typically used our monthly allotment in less than
two weeks.
 HMEs: Before our son was decannulated, he would sprint off
the vent for at least 8 hours a day. His secretions would fill
the HME after a couple of hours. Even though we suctioned
his HME, it still needed to be replaced. If possible, have your
child use a speaking valve instead of an HME, when off the
ventilator. Our son hardly needed suctioning when using the
speaking valve and other parents/caregivers have had the
same experience.
 Ventilator Circuits/Omniflexes: Similar to the suction
catheters, we tended to run low on the ventilator circuits and
omniflexes during the winter. While we would suction some
of the tubing, we would need to change out parts of the
circuit and the omniflex. Secretions would build up in the
tubing and we didn’t want to introduce any additional
bacteria into our son.
 Pulse Ox Probes: Because the pulse ox probe is on 24x7,
they eventually lose their stickiness or they just wear out
with activity.

2.7. Home Supplies “Lessons Learned” (cont’d)
Here are some key “lessons” we learned with our home supplies: (cont’d)
• Typical Supply Shortages (cont’d):
 Feeding Bags: Because the typical monthly allotment of feeding
bags is 30, if there is anything wrong with a feeding bag (ex. hole,
pinched tubing), then you are already short for the month.
This is how we addressed the shortages:
 Other Equipment Sources: Refer to Resources to find on-line
resources for supplies for just the cost of shipping.
 Hospital Visits/Stays: If the child comes in for any hospital visits,
surgeries, etc., any supplies in the room cannot be used for another
patient. This is often how we’d stock up on pulse ox probes and
suction catheters. Instead of being disposed, we would take them
home.
 Nursing Agency: If you use a nursing agency, they might have some
supplies, like gloves, to give you. But, keep in mind they have many
patients so availability/quantity of these items may be limited.
 Reuse: While this is not a recommended practice, we would
sometimes reuse catheters more than once, but were “smart”
about it. For example, we would typically do this during the
summer, when viruses and bacteria levels were lower. We would
use a catheter about 2-4 times and then dispose of it. Again, this is
not a recommended practice but was a decision we made to
maximize our suction catheter inventory during the winter. Other
families/caregivers clean their suction catheters and reuse them.
These families/caregivers use either vinegar or a disinfectant
germicide called Control III to clean the catheters. For feeding bags
or feeding tube extensions, this parent’s blog entry has some
instructions on what they did when they were in a bind.
 Additional LOMN: You can also have your doctor write an additional
letter of medical necessity (LOMN) for additional supplies. But,
keep in mind that this process takes longer through insurance and
there is no guarantee that the insurance company will approve it.
We only used this process once for suction catheters.

2.7. Home Supplies “Lessons Learned” (cont’d)
Here are some key “lessons” we learned with our home supplies: (cont’d)
• Typical Supply Shortages (cont’d): This is how we addressed the
shortages:
 Improvise: Sometimes, you just have to improvise. For example, if
the pulse ox probe was still working but losing its stickiness, we’d
use some adhesive tape to keep it on our son’s foot/toe. There’s
also a product called All-Fit Tapes (looks like a pulse ox probe sensor
without the wiring – a.k.a. Teddy Bear tape) or Elastikon (rubber-based
adhesive tape) that you can get through your DME company
to put over a less sticky pulse ox probe. We would also pull parts
off of a new ventilator circuit to use on the current circuit (and save
the incomplete circuit for future parts). You just have to be creative
sometimes. Again, refer to Resources for on-line groups focused
where you can ask for guidance/advice from other families.

2.8. Supply Ordering Process
Typically, you will order your supplies on a monthly basis. Depending on your DME company
and the deemed medical complexity of your child, you may have an assigned DME
representative to take your order or perhaps anyone can take your order at the DME company.
You will either call or email your DME company to order your child’s supplies. Once your
order is taken, ensure you understand when the supplies will be delivered and method (ex.
FedEx, in person, in case someone needs to be home for the order to be delivered). Always
make sure you put in your order to allow enough time for it to be delivered before you are at
risk of running out of any supplies. But, keep in mind that due to insurance limitations, your
order can only be delivered during the month within 3-5 days of the previous month’s delivery
day. Therefore, keep holidays in mind when you place your order.
Once you receive your supplies, ensure you check the following:
• Did you receive all of your supplies?: Ensure all the supplies you ordered were received.
• Did you receive the right quantities of supplies?: Nothing is more frustrating than not
realizing you didn’t receive all of your suction catheters until you really need them.
• Did you receive the right supplies?: Ensure you check the supplies for accuracy (ex. trach
size, suction catheter sizing, etc.).
If you find any discrepancies, notify your DME company immediately so that the discrepancy
can be addressed immediately.
To better track our son’s supplies, we used a spreadsheet to track his monthly orders. Not
only did it make it easier to verify the quantities received were accurate from the DME
company, but we could use the prior month’s order to compare whether or not more or less
might be needed for some specific supplies. Here’s an excerpt from it below:
Example DME Order Tracking Form
A soft copy of a DME order form template is attached.

2.9. Home Equipment Problems/Failures
At some point, you will run into issues with your equipment. As mentioned earlier,
the troubleshooting sections of the equipment manuals are helpful. But, if those
suggested resolutions do not work, the equipment will need to be replaced.
In the case where you cannot resolve the equipment issue(s), then you need to
contact your DME company for a replacement. During the week, the DME company
should be able to send out a replacement to you. If it’s over the weekend, you can
call the DME company and you will talk to the person on-call. Depending on the
equipment, you may or may not get a replacement immediately. For example, if a
ventilator or suction machine fails, this equipment will be replaced immediately (ex.
same day). But, if your feeding pump fails, then it will most likely be replaced in 24-
36 hours.
While you wait for the DME company to arrive, some example back-up options
include:
• Suction machine fails: Use back up suction machine. There is also a ‘manual’
suction device called the DeLee Suction Trap. By sucking on the tube, suction
pressure is created. There is also the Res-Cue Pump, which is lightweight and has
overfill protection.
• Ventilator fails: Use back up ventilator.
• Pulse ox fails: Monitor color of your child, not only their face, but their lips, and
fingertips (like what you learned in the hospital).
• Feeding pump fails: Use 60cc catheter tip syringe to deliver a bolus feed.

3. Trach Care
Once we knew our son was going to be discharged, we had to decide how the trach care
would be done at home. Would we do the exact same care we did at the hospital? Is that
even possible with the equipment and supplies we have at home? What other types of trach
care do we have to do that we are at home?
3.1. Daily Care Plan
Twice a day, our son’s trach site was cleaned and checked. Our son had one trach site
infection. This is the process we followed to ensure our son’s trach site remained healthy:
• Remove 2x2 split IV sponge under trach and examine it for any
leakage, odor, etc.
• Lift up trach slightly and clean around site with a cotton swab with
sterile water. Also, examine cotton swab for any leakage, odor, etc.
Note if the trach site is red, inflamed, or has any tears around it.
• Place a new 2x2 split IV sponge under trach site. TIP: Use a 1cc
syringe plunger to push IV sponge underneath the trach. It makes it
so easy.
• Ensure trach ties are tight, but not too tight. As a rule of thumb,
one finger should fit snugly underneath the trach ties. Check our
son’s skin around the neck for any redness or cuts. And, look at the
ties to see if they need to be changed (ex. dirty).
• Check ventilator settings (if connected to ventilator). Sometimes,
the ventilator can be bumped and a setting (ex. pressure support)
can be changed. Update the settings, if needed.
If we saw any leakage that was yellow or green in color, smelled a bad odor, or if the site was
red and/or inflamed, we assumed our son had an infection at the trach site. We contacted
our doctor to have it examined. We used an antibiotic ointment (ex. Bactroban) on the trach
site for a few days.
Once, when changing our son’s trach, we noticed the trach site was torn (probably due to our
son’s yanking of the tubing). We contacted the doctor on-call but due to a potential deadly
situation (pneumothorax – lung collapses due to the air in the space around the lungs), the
doctor wanted us to go to the ER to have it checked out. Luckily, our son exhibited no
symptoms so we were sent home. The following day, we saw ENT and we were told to use
Bactroban on the trach site for a few days and it eventually healed.
If you determine that the trach ties are loose or need to be changed, you will want to ensure
you have someone with you to tighten or change the trach ties. Since our son was less active,
his trach ties did not loosen often. We changed his trach ties twice a week.
03-01 ©2014 Laura Elliott

3. Trach Care
There are additional activities you will need to be doing daily beyond the trach care.
Therefore, it’s best to create some checklists to ensure you have done the following:
• Emergency Bag Verification: You have been supplied the list of
items to carry in your Emergency Bag. We used an Excel document
for the nurses to ensure all the items on the document were in the
Emergency Bag and confirm there were no expired medications.
This Excel document was printed monthly for the nurses. A sample
Emergency Bag checklist is below. Some items are already on the
list for you and you can then add additional items to this checklist.
• Equipment/Supply Verification and Changes: Now that you are
home, you decide when certain activities will be done like (but not
limited to):
Equipment/Supply Activity Frequency
Run Water (ex. Distilled) through Suction Tubing
after Suctioning Child
Every suction
Check O2 tank Every shift
Verify Pulse Ox Alarms Every shift
Check Emergency Bag Every shift
Check Ambu Bag and O2 tank at Bedside Every shift
Ensure Suction Machine Available and Charged Every shift
Check Nebulizer Machine Every shift
Clean Nebulizer Cup Every shift
Clean Suction Canister Every shift
Add Mouthwash to Suction Canister (if secretions
Every shift
have an odor)

3. Trach Care
• Equipment/Supply Verification and Changes (cont’d): Now that
you are home, you decide when certain activities will be done like
(but not limited to):
Check Ventilator Settings Every shift
Ensure Back-Up Ventilator Charged and Ready Every shift
Ensure Back-Up Batteries Charging Every shift
Ensure Back-Up Suction Machine Charging Every shift
Ensure Distilled Water in Gravity Bag Every shift
Change Ventilator Circuits Every week
Change Suction Canister Every week
Change Trach Ties Twice a week
Change Trach Once a week
A sample Equipment Checklist is below. Some activities are already on the list
for you and you can then add additional activities to this checklist.

3. Trach Care
3.2. Weekly Care Plan
There were a few activities we did on a weekly basis but these were most important to us:
• Change trach. We always picked the time of day when our
son was most content: not around a feeding (so that he
wouldn’t reflux/throw up), calm, etc. We would wrap him
up nice and tight with a swaddling blanket (other parents
use the Baby Bubadoo) to ensure his arms and legs did not
interfere with the process. We also made sure the day was
“easier” for us since our son did not enjoy his trach being
changed. We usually changed the trach around dinner time
every Thursday night so we had a “simple” dinner to make
it easier on ourselves, too. We always examined the old
trach for any color or odor to it, deformities (we’d throw
away), etc. If we had any concerns about it, we would
contact our doctor.
• Change ventilator circuit. One of us would watch our son
on the back-up ventilator while the other person changed
the circuit. The odor from the alcohol prep pads made our
son upset (due to all the pricks he had) so we made sure to
have him out of the room during that process or used the
pads outside of his bedroom. We always tested the
ventilator to make sure it was working properly prior to
putting our son back on it. We used the test lung on the
end of the circuit to ensure it’s working properly, all the
ventilator numbers look accurate and normal, etc. To
prevent the apnea alarm from going off, we would squeeze
the lung to simulate breathing.
3.3. Monthly Care Plan
Every month, we cleaned and sterilized our son’s trachs. We used the boiling process
provided to us by the hospital to clean and sterilize his trachs.
While we received two trachs/month from our supply company, we did not throw away the
trachs from the prior month. It was helpful to have back-up trachs, especially when our son
was sick (we needed to change the trach more often when our son was sick). Each cleaned
trach was double-bagged in clear, quart-sized bags and labeled with the size and two dates
(date cleaned and date of original delivery). As our trach inventory grew, we threw away the
old trachs, since only unopened trachs can be shared or donated.

3. Trach Care
3.4. Trach Tube Cleaning
As mentioned in Equipment & Supplies – 2.4 Home Supplies - Trach, our son received two
trachs per month. But, we needed more trachs available for his emergency bag, trach box,
etc. Therefore, we needed to re-use trachs in order to have an adequate supply.
Obviously, we had to ensure these previously used trachs (our son used Bivona Uncuffed
Neonatal FlexTend trachs) were cleaned and as close to sterile as possible. These are the trach
tube cleaning instructions we received from our children’s hospital prior to our son’s
discharge. Our understanding was these instructions were Bivona’s recommended cleaning
process for trachs:
• To clean beneath the tracheostomy tube swivel, insert the disconnect wedge between the
plastic swivel sleeve and the base of the silicone neck flange, disengaging the swivel for
manual removal. Wash tube, and all components in a mild soap solution and rinse it
thoroughly. Sizes 6.0 – 9.5 I.D. tracheostomy tubes do not have removable swivels.
• After cleaning, re-attach the plastic swivel sleeve by gently sliding the sleeve onto the base
of the neck flange, making sure to orient the larger end of the plastic swivel sleeve towards
the base of the neck flange. Twisting and pushing on the sleeve will help to re-attach the
sleeve. Check to make sure that the small end of the plastic sleeve snaps snugly into place
at the proximal end of the silicone connecting shaft. Inspect the swivel to assure proper
placement and movement.
• Allow the tube to air dry.
• Insert the obturator into the clean and dry tube.
• Store in a reclosable plastic bag or sealed container until needed.
• Prior to use, remove the tube from its container and place the tube and the obturator side
by side in a pan of rapidly boiling water.
• Cover the pan and REMOVE FROM THE HEAT. For best results, use only distilled or sterile
water.
• Allow the water to cool to a comfortable temperature before attempting to remove the
tube and the obturator.
• Insert the obturator into the tube, being careful to handle the tube only by the neck flange
and the obturator by its handle.
Once the trachs were cleaned, we did the following:
• The trachs were double-bagged in clear, Ziploc bags.
• Each bag was labeled with two dates: cleaned date and receipt date (date originally
received trach). We would dispose of older trachs as we received new ones. We usually
kept trachs for 3-4 months.

3. Trach Care
3.5. Protecting Our Trach/Vent Children
Trach care not only includes caring for the trach and its related equipment, supplies, etc., but
also for the underlying medical complication requiring the trach. Most of our trach/vent
children have one or more major body systems (ex. pulmonary, cardiovascular) that are
compromised. Therefore, it’s imperative to keep the child as healthy as possible.
3.5.1. Vaccines
Our plan was to always ensure that our son received all of the standard vaccinations. But, as
we learned, it was even more critical for our trach/vent son to have his vaccinations because
multiple major body systems (ex. pulmonary, cardiovascular) were compromised.
The Center for Disease Control (CD) recommends a standard schedule of vaccines for children,
adolescents, and adults. The standard vaccines that are particularly critical for trach/vent
children due to respiratory impacts/complications include:
• Pertussis (Whooping Cough)
• Influenza (Flu)
• Pneumococccal (Pneumonia)
There is also an “injectible” available to some
children that’s not on the standard immunization
schedule. Ever heard of Respiratory Syncitial Virus
(RSV)? We had not heard of it prior to our son being
born. It’s a very common, seasonal , and contagious
virus. It looks like a typical cold…sneezing, coughing,
runny nose, and perhaps a fever. Most children have
had RSV by the time they are two.
But, RSV can have severe impacts on high risk infants
and children. “High risk” is defined as anyone born at
35 weeks or less, born with certain types of heart
disease, or has chronic lung disease. Weaker lungs,
hearts, and immune systems can lead to a severe
lung infection from RSV. Instead of standard cold
symptoms, you see more severe symptoms like
wheezing, nasal flaring, chest retractions, gasping for
breath, etc. RSV can lead to more serious illnesses,
like pneumonia or bronchiolitis.
Source: www.cdc.gov
03-06

3. Trach Care
3.5. Protecting Our Trach/Vent Children (cont’d)
3.5.1. Vaccines (cont’d)
And, we can confirm how vicious RSV is on our children
with chronic lung disease, because our son contracted RSV
in February 2013. This was, by far, the sickest he had ever
been since he came home from the NICU in
August/September 2007.
Our son contracted RSV from a preschool classmate about
4.5 years after he was decannulated. He came home from
school on a Wednesday with typical cold symptoms (runny
nose, some congestion).
On Thursday, he had a very bad cough, and the regular
Albuterol/Pulmicort treatments didn’t seem to be helping.
We called his pulmonologist at noon Thursday and started
his oral steroid (Orapred).
After 12 hours on the Orapred, John would typically show
signs of improvement. Instead, on Friday morning, he was
on the most oxygen he had ever been on at home, the
cough was about the same, and he showed signs of
dehydration (i.e., diaper was dry). We saw his
pulmonologist that Friday morning and he was
immediately admitted.
Luckily, he did not need to be intubated or put in an
oxygen tent. His treatment was no different than what we
did at home (percussion vest, Albuterol/Pulmicort
treatments, Orapred) but he definitely needed to be
monitored due to the severe coughing (impacted his
breathing).
It took him about 2.5 weeks to fully recover from RSV. He
would have recovered quicker if he hadn’t developed
croup, a potential complication from the RSV.
So, if a child who has been decannulated for almost five
years can be this sick, you can imagine how sick a
trach/vent infant/child can be from RSV.
RSV Admittance Room – February 2013
03-07
The inCourage System
(John’s Percussion Vest)
Source: www.respirtech.com
Our RSV Medications, and Orapred (not shown)

3. Trach Care
3.5.1. Vaccines (cont’d)
Many high risk infants and children receive Synagis , a
prescription injection (typically a shot in the thigh) of
antibodies that is given monthly to help protect high risk
infants from severe RSV during the RSV season. Synagis is
not a vaccine – it will not prevent your child from getting
RSV.
Unfortunately, insurance companies tend to control the
number of Synagis injections infants and children receive
during RSV season. Our experience was the following:
• The Synagis injections were approved from November
until March, so our son received a total of five
injections per RSV season. NOTE: We live in Region 3
(Philadelphia).
• Our son only received Synagis for two years (until he
turned two). Insurance would not approve him for
Synagis after he turned two. Hopefully, you do not
experience what this father did.
• Our home care nurses were able to administer Synagis
in the home with a doctor’s order. That way, we could
avoid all the sick children at the pediatrician’s office.
• Synagis was injected into his thigh, like other vaccines.
• As our son grew, the Synagis shot had to be split into
two shots. Once the child reaches a certain weight,
Synagis has to be split up into two injections because
the muscle can only absorb so much medication. For
us, two nurses would inject the shots at the same time
in each thigh, so that the injection pain was
experienced “once.”
Source: www.kidshealth.org
03-08

3. Trach Care
3.5.2. Disease Prevention
Our children are going to get sick – it’s a fact. They are children. But, I do believe that one of
the factors why our son was able to be decannulated after being home for just one year was
because his respiratory illnesses were kept at a minimum, which allowed his lungs to get
stronger.
While we cannot prevent our children from getting any illness, there are simple steps that can
be taken to keep disease transmission at a minimum. Here are some of the steps we followed
in the home:
• Wash hands. We constantly washed our hands before
touching our son. And, we ensured that any other
visitors in the home (ex. therapists, nurses, family) also
washed their hands. Hand sanitizer does not kill all
viruses (ex. some noroviruses).
• Clean equipment and other highly used objects with
disinfectant wipes. On a regular basis, we would wipe
down the ventilator, suction machine, pulse ox
machine, etc. with disinfectant wipes. We also wiped
down other commonly used objects, like the TV
remote, pens, toys, etc. Don’t forget those mobile
phones! Other families have used PhoneSoap for
cleaning of mobile phones.
• Do not share. We didn’t borrow any items from others.
• Avoid crowds. Our son’s first mall experience occurred
when he was three, and that was in one store for 20
minutes. Our pulmonologist recommended avoiding
religious institutions to us. He said, “God will
understand and forgive you.”  Also, make doctor
appointments for your child either first thing in the
morning or the last one in the afternoon. Less people
(i.e., sick children) are around during these times.
03-09

3. Trach Care
3.5.2. Disease Prevention
While we cannot prevent our children from getting any illness, there are simple steps that can
be taken to keep disease transmission at a minimum. Here are some of the steps we followed
in the home: (cont’d)
• Minimize contact with sick people. We avoided sick
people like the plague. If someone had a cold, we did
not have them in our house. We tried to avoid the
pediatrician’s office and children’s hospital as much as
possible. After bringing home a couple of viruses, we
started having our son wear a mask (the cute pediatric
masks referenced earlier in this guide).
• Educate others. While we as parents of medically
fragile children understand the impacts/risks of these
diseases, other family members and friends do not, as
they did not go through this experience. It’s important
to educate others in order to minimize the impact on
our children. You can use this article to provide to
other family members and friends why it’s important to
keep your child healthy.
03-10
Source: Image by McGrath-
Morrow and Collaco via Advance
Web

4. G-Tube Care
Similar to trach care, we had to decide how the g-tube care would be done at home. Would
we do the exact same care we did at the hospital? Is that even possible with the equipment
and supplies we have at home? What other types of g-tube care do we have to do that we are
at home?
4.1. Daily Care Plan
Twice a day, our son’s g-tube site is cleaned and checked. Our doctors compliment us on his
stellar g-tube site. This is the process we follow to ensure our son’s g-tube site remains
healthy:
• Rotate the g-tube to ensure there are no obstructions.
• Remove 2x2 split IV sponge around g-tube and examine it
for any leakage, odor, etc.
• Clean around site with a cotton swab with sterile water and
mild soap (we use Cetaphil). Also, examine cotton swab for
any leakage, odor, etc. Then, use another cotton swab with
half strength hydrogen peroxide ( ½ sterile water, ½
hydrogen peroxide) and clean around the g-tube site. Note
if the g-tube site is red, inflamed, or has any tears around it.
• Place a new 2x2 split IV sponge around g-tube site.
Our son’s very clean g-tube site
If we see any leakage that was yellow or green in color, smelled a bad odor, or if the site was
red and/or inflamed, we assumed our son had an infection at the g-tube site (this happened a
couple of times before the above process was followed). We would contact our doctor to
have it examined. We would use an antibiotic ointment (ex. Bactroban) on the g-tube site for
a few days. A couple of times, our son was prescribed Keflex , which is an antibiotic fused to
stop the growth of bacteria. Unfortunately, like other antibiotics, it can wreak havoc on your
child’s GI system. This is why we try to avoid any g-tube infections.
Also, if you ever see any abnormal secretions from your child’s g-tube (ex. blood, black specs
that look like tea, or green bile), you will want to follow up with your doctor. Your child may
have some trauma in the stomach or another issue. Your doctor can address the issue
accordingly. Our son’s GI doctor typically prescribed Carafate, a medication used to treat and
prevent ulcers.

4. G-Tube Care
There are additional activities you will need to be doing daily beyond the g-tube care.
Therefore, it’s best to create some checklists to ensure you have done the following:
• Emergency Bag Verification: Add to your Emergency Bag
verification list (from Trach Care section) the following items:
• G-Tube
• Feeding Bag
• Extension
• 60cc Catheter Tip Syringe
• Water (Distilled, or at least some water access for balloon)
• Equipment/Supply Verification and Changes: Now that you are
home, you decide when certain activities will be done like (but not
limited to):
Confirm Volume/Rate on Feeding Pump Every Feed
Change Feeding Bag Every day
Change Syringes Every week
Change Extension Every week
Change Water in G-Tube Balloon Every week
Change G-Tube Every three months
You can add the above activities to the checklist supplied in the Trach Care
section.
4.2. Weekly Care Plan
There were a few activities we did on a weekly basis but this one was most important to us:
• Change g-tube balloon water. Your doctor will tell you how
much water to put in the g-tube balloon. We use 5cc of
distilled water in our son’s g-tube balloon. We have a
specific g-tube balloon syringe (labeled in our son’s
bathroom) dedicated to this process. We do not use the
syringes dedicated to medication administration for this
process.

4. G-Tube Care
4.2. Three Month Care Plan
Every three months, we change our son’s g-tube. Some parents/caregivers change it more
frequently, and some less frequently. Three months seems “just right” for our little man.
We always examine the “old” g-tube after it’s removed from his stomach. The balloon is
typically tan or a yellowish color. We are looking for any reddish or brownish colors (ex.
blood).
If you find yourself changing your child’s g-tube frequently (ex. once a month or more often),
you may want to talk to your doctor. When our son initially came home, he had a 12 Fr, 2.0cm
g-tube. The g-tube balloon kept breaking (i.e., the g-tube would come out of his stomach) at
least once a month. We talked to our doctor about it and he downsized the g-tube to a 12 Fr,
1.7cm g-tube. After this change, we no longer had an issue.

4. G-Tube Care
4.4. GI Issues
If there is one thing I have learned about g-tubes over the last few years, it’s that each child’s
g-tube experience is unique. These experiences can be attributed to the child’s underlying
medical conditions, genetics, etc. Some of the common issues encountered include, but not
limited to:
• Retching
• Gas
• Reflux
• Constipation
• “Dumping”
Source: WebMD
While you are most likely working with a doctor if your child has encountered any of the
above issues, it’s important to know that there are many different solutions to the above
issues, and way too many to list here. And, you are not the only one trying to figure out the
right answer for your child.
I highly recommend you review the Resources section to connect with other parents and
caregivers on these common conditions associated with g-tubes.
Our son experienced the following issues:
• Gas: Our son mainly suffered from gas pains when he was younger. To alleviate his gas
pain, we did the following:
• Vented Belly: Before and after his feeds, as well as before any medications were
administered, we’d take the 60cc catheter tip syringe and insert it into the main
port. We’d then unclip the extension and press on his belly to allow any air to come
out into the syringe and be released. We also used Farrell bags (special bag that
attached to the g-tube extension and feeding bag) during his feeds. NOTE: It’s not
easy to find Farrell bags, much less get them covered by insurance. They are NOT
cheap.
• Tested for Allergies: We discovered our son had some allergies, and was actually
allergic to one of the ingredients in his formula. We subsequently switched
formulas.
• Used Mylicon: We would use Mylicon drops in his feeds. Honestly, we didn’t see
much of a difference with the Mylicon.
• Reflux: This is a condition that occurs when stomach acid backs up into the esophagus, the
tube that connects the mouth to the stomach. There is a muscle at the bottom of the
esophagus called the lower esophageal sphincter (LES) that normally keeps acids in the
stomach. But if the LES relaxes too much, the harsh stomach acids can rise up and irritate
the delicate lining of the esophagus. That leads to heartburn and other symptoms. There
are a number of medications, natural remedies, etc. that parents and caregivers, in
conjunction with their doctors, use to solve their child’s reflux issue. It took us quite some
time (over a year) to find the right combination that worked for our son.

4. G-Tube Care
4.4. GI Issues (cont’d)
Our son experienced the following issues: (cont’d)
• Reflux (cont’d): Our son uses a combination of the following to manage his reflux:
• Erythromycin: A low dose is used to accelerate gastric emptying.
• Prevacid: This is a proton pump inhibitor, which reduces the amount of acid in the
stomach.
• Positioning: We keep our son upright during and after feedings, since gravity helps
keep the stomach contents down.
• Constipation: While our son is rarely constipated, when he is, he only requires some prune
juice to “get things going.” There are numerous medications and remedies used by other
parents and caregivers for their children. One of the most commonly used medications is
Miralax.

5. Home Care Nursing
Your child will qualify for home care nursing (also referred to as private duty nursing) because
of his/her trach. Home care nursing includes a Registered Nurse (RN) or Licensed Practical
Nurse (LPN) coming into your home to help you take care of your child. While an RN has more
training than an LPN and slightly different duties (regulated by the state), both are qualified to
care for your child. Your nurse should be trach/vent certified, that is, they attended a
trach/vent class and passed the associated test. But, depending on your location, trach/vent
certified nurses may not be available and you may need to train them.
While it may seem uncomfortable to have a stranger taking care of your child in your home,
you will be thankful for the help. You will appreciate having them help you with doctor
appointments, outings, school, and even give shots (ex. RNs can administer Synagis for RSV) at
home. And, when your child is sick or encounters an emergency, you will be even more
thankful that they are there by your side.
Typically, your child will be approved for home care nursing 24 hours/day, 7 days/week, for the
first two weeks your child is home. Then, your child will most likely be approved for 12-16
hours/day after the initial two weeks, depending on what your insurance company approves.
5.1. Home Care Nurse Selection
Once you have an idea of a timeframe for your child’s discharge, you can start thinking about
setting up your home care nursing. You have a couple of options for your nursing:
• Obtain nurses through a home healthcare agency.
• Find your own nurses through mediums like Craig’s List, etc.
If you can, it’s highly recommended to use a home healthcare agency to supply your nurses
for a variety of reasons like:
• Background checks (ex. criminal, child abuse, etc.) already
conducted.
• Agencies have a large pool of nurses for staffing.
• Nurses have been through training, appropriate
certifications, and testing.
• Services like a staffing coordinator and case manager save
you time.
If you do not use a home healthcare agency, you’ll need to interview potential nurses and
caregivers. Not sure what interview questions to ask? The people at Complex Child E-Magazine
compiled a list of the 40 best questions to ask a potential nurse or caregiver.
Mommies of Miracles also compiled a list of questions when choosing a home health nurse.

5.1. Home Care Nurse Selection (cont’d)
If you decide to use a home healthcare agency, then you will need to select an agency. You
will want to obtain a list of home healthcare agencies approved by your insurance company(s).
Once you have this list, you can interview them and ask questions like:
• Do they have trach/vent nurses available to care for your
child?
• What kind of training do these nurses have before they
come to my home? Will they come to the hospital for
orientation prior to your child’s discharge?
• What is the scheduling process? How often will you get a
schedule?
• Do I have a central person who covers the child’s case at
the agency (ex. to discuss problems)?
• What if there is a call-out? Will another nurse come?
• What if I don’t like a nurse? Do I have any input into the
nurses that care for my child?
• As the care for my child changes (ex. new medications,
etc.), how do the nurses know about these changes?
• Does the agency accept your insurance?
5.2. Initial Set-Up with Home Healthcare Agency
If you plan to use a home healthcare agency, you will mainly work with two different roles:
staffing coordinator, and case (or care) manager.
Your staffing coordinator will be responsible for generating your nursing schedule. Based on
your number of authorized hours from your insurance company and requested shift schedule,
the staffing coordinator will create a schedule, designating which nurses will be filling your
shifts. If there is an open shift, the staffing coordinator will work to fill that opening. Make
sure to have your nurses review each monthly schedule for any errors.
Your case manager, usually someone with a nursing background, will be responsible for
creating and maintaining your child’s plan of care, obtaining and helping with insurance
authorizations and appeals/denials, and providing guidance on any medical questions, etc.
For the initial discharge, our case manager rode with our son in the ambulance to our home.

5.2. Initial Set-Up with Home Healthcare Agency (cont’d)
Either before or when your child comes home, your case manager will bring the following
paperwork to your home:
• Plan of Care (or you may hear it referenced as “the 485”): This
document is usually several pages long that goes into detail
about your child’s care. This document is updated every few
months to incorporate any changes in medications, etc. The
Plan of Care includes information like:
 Your child’s medical diagnoses.
 What/when medications are to be given with the
associated dosages.
 Any limitations.
 Treatment plans.
This document will be in a 3-ring binder with other
standard documents from the nursing agency (ex. policies).
• Medication Sheets: This document is also several pages long,
listing all of your child’s regularly scheduled and PRN (as
needed) medications, formula, food, etc. This document is filled
out by the nurses when they give your child any of these items.
The medication sheets are replaced every month. If your case
manager doesn’t bring a clipboard, we recommend you buy one
to hold the medication sheets.
• Nurse’s and/or Clinical Notes: This is the document each nurse
completes for their shift. It details your child’s activities during
that shift. For example, it will have your child’s vital signs, what
medications or foods given, diaper changes, did your child sleep,
etc.
• Flow Sheets: Flow sheets differ across home healthcare
agencies but nurses record vitals signs, and other key activities
(ex. feeding, diaper changes) on this sheet.
• Time Slips: You will sign the time slip for the nurse, confirming
the hours the nurse worked for his/her shift.

5.2. Initial Set-Up with Home Healthcare Agency (cont’d)
• Addendums (i.e., Order Changes to the Plan of Care): If there is a
change to the Plan of Care (ex. Increase in dosage of a
medication or change in medication), then an addendum or order
change will be required. The case manager will then update the
Plan of Care and medication sheets to reflect the order change.
A doctor’s signature is ALWAYS required for an order change. And
since order changes can occur over the phone or without a nurse
around (ex. you take your child to an appointment), it’s best to
discuss how order changes are to be completed with your case
manager once your child comes home. But, at least for any new
or modified (ex. dose change) medications, your nurse can
transcribe what’s on the medicine bottle’s prescription label to a
new order without a doctor’s signature. But, if this new
prescription is a replacement for another medication, an order
change will be needed to discontinue the other medication.
• Communication Book: This will be provided by you. This is a
spiral notebook on which you can write notes to your nurses. For
example, you can document notes about blood results, a doctor’s
appointment, or highlight a new order.
5.3. Open Shifts/Call-Outs
My next statement is not meant to scare you but to provide some context about trach/vent
nurses. Unfortunately, there is a shortage of trach/vent nurses in the U.S. Typically, home
health nurses are paid less than nurses working in hospitals, thus, there is less incentive to
work in home healthcare. Also, insurance companies do not pay nurses more for working
trach/vent cases, which tend to be more complex than your average case. Therefore, there’s
less incentive for nurses to obtain this certification and work these cases.
This shortage means you cannot assume nursing is as reliable as daycare (ex. when daycare
has a call-out, they have a “pool” from which to pull other teachers, aids, etc.). You will have
open shifts – day and night. And, you will not always have much notice of an open shift (i.e.,
call-outs). While this may sound pessimistic, it’s important to have your expectations set up
front so that you can better prepare for what lies ahead of you.

5.3. Open Shifts/Call-Outs (cont’d)
These open shifts cause a huge strain on caregiver(s). For example, if the night nurse calls out
an hour before the shift, one caregiver will have to stay up while the other caregiver sleeps.
So, how do you choose? If only one of the caregivers works, does that automatically mean
the other caregiver stays up all night? But, what if there’s no nurse the next day for that
caregiver to sleep? Or, what if both caregivers work? How do you choose who will have the
more unproductive day at work? What if both caregivers have a big meeting? Even more
difficult, what if there is only one caregiver who has to care for the child and work? Will this
single caregiver be able to work? As you can see, this can put a lot of strain on the
caregiver(s) and their relationship (if two caregivers).
As physical exhaustion burdens caregivers, so does the lack of a personal life. Plans made for
a date night, birthday celebration, or a wedding are always tentative since you never know if
your nurse will call out. There have been numerous times where we had to disappoint family
and friends because we could not make an event last minute due to a call-out.
How many call-outs will you have? It’s hard to say since much of it depends on your nurses.
Our experience has been that most call-outs occur in the winter time due to illness or bad
weather. Obviously, a nurse could always encounter an emergency and will need to call out.
More of the “planned” open shifts occur during the summer (vacations) and around the
holidays.
Sometimes, the home healthcare agency (if using one) can find a back-up. Because your child
is trached and vented, it will even be more difficult to find a replacement nurse. Therefore,
don’t expect a replacement. If there’s any way to train another member of your family to care
for your child, definitely do that so that you can get some sleep or get a break.
Both of us had big corporate jobs, including lots of hours and travel. When our son came
home, for us to be successful with his care and development, we agreed that one of us had to
give up the corporate job (me). While we knew it was the right decision for our son, it was
still very difficult for me because I had to give up a very good career. I have started working
again for my old firm but in a much different capacity (ex. part-time from home, so that I can
work a little yet still handle all of our son’s care). But, not everyone can do this so families
have to figure out what they can do to minimize open shifts and call-outs.
The “good” news is there are some specific actions you can take to ensure the trach/vent
nurses that take care of your child come continue to take care of your child. Home care
nurses who work on a per diem basis (i.e., not full-time, and many of them are per diem) can
decide which cases they will and will not work. Making your home a “great place to work” will
increase the likelihood of trach/vent nurses working your case.

5.4. Nursing Considerations
While we had our challenges with open shifts and call-outs, there was a lot of effort done on
our part to keep our nurses comfortable and happy to ensure they wanted to continue
working our son’s case. Here are some of the actions we took to minimize the number of
open shifts and call-outs:
• Use Multiple Home Healthcare Agencies (if using agencies):
You can cover more shifts by increasing your “supply” of
trach/vent nurses with multiple home healthcare agencies.
Your nursing authorization is for a specific number of hours,
not a number of agencies. Multiple agencies will require
more work on your part (ex. scheduling, reporting any order
changes more than once, etc.) but if you can get more rest,
it’s worth it. We used two agencies.
• Teach Someone How to Care for Your Child: I honestly don’t
know how realistic this is. We do know a few families that
were able to teach other family members how to care for the
child. It’s a lot to ask of someone but if your family has two
caregivers that work full-time, you will need this.
• It’s a Partnership: Instead of thinking of your nurse as an
“outsider” or “employee” in your home, think about your
nurse as another key caregiver for your child. The nurse is
keeping your child alive by ensuring your child’s airway is not
compromised. And, they also offer you advice, experience,
and support.
• Treat with Respect: While this seems obvious, you want to
treat your nurses with respect. If you don’t, they won’t come
back. If the nurse accidentally leaves a light on or comes a
little late, there’s no need for yelling. You can write down a
reminder about turning lights off or politely remind them of
another commitment you have.
• Keep It Clean: Do you like working in a dirty environment?
Neither do we. It’s important to keep the area(s) where the
nurse will be with your child clean. Not only does this
minimize the chance of spreading germs, it also makes the
environment that much better for everyone in which to work.
For example, we clean our son’s bathroom and bedroom
every week.
Source: www.bayada.com

5.4. Nursing Considerations (cont’d)
• Make a Comfortable Environment: Similar to keeping a clean
environment, you want to make sure you make their
“working” environment (i.e., your home) is a pleasant
environment. For example, for our night nurses, there’s a big
comfy chair and a TV for them in our son’s room, as well as a
side table (for writing, coffee/tea mug, etc.). And, there are
plenty of toys, music, and books to keep our son busy with
nurses during the day. And, don’t forget about the
“essentials.” Make sure there’s enough paper towels, toilet
paper, tissues, etc. for the shift. And, be organized with those
“essentials” and supplies so that your nurses don’t have to dig
through boxes in the middle of the night for supplies.
• Keep Everyone Updated on Changes: When your child’s care
plan changes (ex. medication changed or discontinued),
ensure you tell all of your nurses (great example of why
communication book is so helpful) and your case manager (if
using home healthcare agency). You want to ensure your
child’s paperwork is all updated to ensure your child receives
the proper care.
• Do Kind Acts: All people feel appreciated when people do
nice things for them. This includes your nurses. While we all
can’t afford to give elaborate gifts, there are some things you
can do for your nurses that will be appreciated and will
encourage them to stay on your case. The types of things we
do for our nurses are:
 Goodies: We do a lot of baking in our home. We
share all of our goodies with them. If they have a
family, we will make a plate with enough goodies for
their family. Or, if my brother-in-law is making a big
dinner, we offer the nurse a plate as well. I am well-known
for my cupcakes and cookies.
 Favors: We remove the snow off their car in the
morning. Or, if it snowed overnight and it will take
some time to remove the snow off the driveway, we
offer the night nurse to sleep in our guest bedroom so
that s/he can get some sleep prior to leaving.
 Cards: We give them cards for their birthdays (if
known) or for Nurse’s Week (starts every year May 6
and ends May 12). We let them know how much we
appreciate all they do for us.
Source: www.bayada.com
One of My Many Cupcakes
National Nurses Week

5.4. Nursing Considerations (cont’d)
• Get to Know Them: It’s also helpful to get to know your nurses.
For example, you may have times to talk on car rides or in waiting
rooms. You can talk about other things besides just your child.
You may find out about a future wedding, moves, children, etc.
And, the next time you see them, you have others things to talk
about. They will appreciate that you remembered something
important to them. But, be careful about getting too close -
nurses come and go.
• You’re the Boss: Many of the nurses have a considerable amount
of experience and offer advice. But, remember, you are the boss.
You do not need to necessarily follow their ideas or advice. You
know your child the best. If you want to have them do certain
tasks, provide them a checklist to ensure all tasks are completed.
And, also remember if for some reason you don’t “click” with a
nurse, you can request a replacement from the agency or notify
them that they will not be employed by you anymore. But keep
in mind that it may take some time to find a replacement.
Depending on the situation, if you can keep them a little longer
while you are searching for a new nurse, you may want to
consider that.
• Share Any Known Plans: If you have “time-sensitive” plans (ex.
movie), let your nurses know in advance. It will be a “hint” to
ensure they arrive on-time and that if something comes up that
can impact your plans, they need to let you know right away.
5.5. Privacy
One of the biggest concerns about having a nurse in your home is the loss of privacy. And, it’s
true, you will have less privacy while the nurse is in your home.
We have found that our nurses try to respect our privacy as much as possible without putting
our son at risk. For example, when we were playing with our son, the nurse would fill out
some paperwork in a connecting bedroom. This allowed us to have some private bonding
time with our son and if we needed her help with suctioning, etc., she was just a few steps
away. You can always ask your nurse to have a little privacy with your child and the nurse will
respect your wishes, as long as the child is not put at risk.

5.5. Privacy (cont’d)
The nurse won’t be with your family 24 hours a day (at least, not after the initial two weeks).
Therefore, you will want to take advantage of those times to have some private time with just
your own family. Maybe it’s an outing to the zoo, maybe it’s just staying inside, maybe it’s a
walk around the block, but whatever you do, make sure you focus on your own family’s
bonding time.

6. Organizing “Everything”
Newborns and children all require a lot of “stuff:” strollers, car seats, diapers, clothes, etc.
Add “trach/vent” in front of that and the “stuff” grows exponentially. Caring for your
trach/vent child is stressful enough. Not being able to find certain supplies, medicines, etc.
can increase the frustration level. Add “administration” (ex. organizing paperwork,
appointments, etc.) on top of that, it can be just overwhelming.
But, there are certain actions/ measures you can do to keep “everything” running smoothly in
the following areas: home equipment, home supplies, and “general administration” (ex.
paperwork, appointments, etc.).
6.1. Home Equipment Organization
Here are some helpful tips on organizing your home equipment:
• Child’s Location: Before your child comes home, take some time to
think about where your child is going to be in the house. Will they
mainly be in their bedroom? Family room? Or, will their time be split in
a few areas? Therefore, you can do the following:
 If your child is going to be in multiple areas of the home, then
you will want to ensure you have equipment set up in both areas.
The last thing you want to be doing is running back and forth
between rooms (or stairs) to get the suction machine. Since you
will have two (primary and back-up) of the main equipment (ex.
suction machine, ventilator) to support your child, then you can
set them up in both rooms. But, if your child requires oxygen,
you will not receive two oxygen concentrators. Ask your DME
company for REALLY long oxygen tubing and they will be able to
provide that to you. Or, you may want to consider oxygen tanks.
 And, where ever you plan to be with your child (and your nurses),
ensure it’s comfortable for YOU. Many parents/caregivers have
glider chairs or rockers for their child. You will most likely have
nurses watching your child at night so ensure they have a place to
sit and write, as well as you, when you don’t have a night nurse.
As I mentioned in Home Care Nursing, we have a big comfy chair
and a side table to hold items like pens, coffee/tea mugs, etc.
• Frequency of Use: There’s a lot of equipment to support your child and
not all of us have the room to accommodate all of this equipment.
Therefore, you can “prioritize” the location of your equipment. For
example, you will want to have equipment that you use frequently easily
accessible, like the suction machine. But, if your child doesn’t require
regular inhalation treatments, you can store the nebulizer elsewhere, so
it’s not in the way.

6.1. Home Equipment Organization (cont’d)
Here are some helpful tips on organizing your home equipment: (cont’d)
• Heat-Generating Equipment: Much of the equipment (ex.
oxygen concentrator, ventilator) generates a lot of heat.
Therefore, you want to think about placement of this
equipment in your house. For example, the ventilator will
most likely have to be near your child. But, you can put the
oxygen concentrator in another room or hallway so that
the room where your child is doesn’t get too hot. Just use
long oxygen tubing to deliver the oxygen, if needed.
• Equipment Movement: You will have an IV pole to hang
the ventilation equipment (ex. ventilator, water bag, etc.).
IV poles do NOT like to move on carpet. So, if you
anticipate a lot of movement with the IV pole and your
child’s location(s) is/are carpeted, then you may want to
consider purchasing some pieces of wood (we bought
some pieces of Pergo) to put on top of the carpet in some
areas so that the IV pole can easily maneuver around the
room. We did try some rubber mats but they tended to
buckle.
• Cords and Tubes Galore: Most of the equipment you have
will need to be plugged in to work or charge: ventilator,
back up ventilator, suction machine, back up suction
machine, pulse ox machine, etc. That’s a LOT of cords. You
can use velcro, velcro clips, or zip ties to keep the cords
more organized. We have even used our son’s trach ties to
help organize cords and tubing. To hold the tubing
together on your child, other parents use adult catheter leg
bands.
• Pets: Do you have any pets? Especially ones that like to
chew up your belongings? The last thing you want is Kitty
or Fido gnawing on your child’s vent tubing like it’s a brand
new squeaky toy or bone. Therefore, if you do have a pet
like that, you may want to consider initially putting up baby
or pet gates around the area where your child will be
located or around other rooms to keep Kitty or Fido
confined to that area. Once you are ready to “test” Kitty or
Fido, you can put your child and pet together to see how it
goes.

6.1. Home Equipment Organization (cont’d)
As you can tell, there are many different things to consider for organizing your child’s
room, equipment, etc. And, who can provide the best ideas and input to organize a
room? Other parents and caregivers! You can go to some of the trach/vent Facebook
groups (Tracheostomy, Kids with Vents, Moms of Trach Babies) listed in the Resources
section of this guide and post this very question. Other members of these groups will be
more than happy to share their ideas, and pictures of what they have done.
I also listed some specific trach/vent blogs in the Resources section that you can also
reference. One particular blog had an entire post dedicated to organizing a house for a
trach/vent child.

6.2. Home Supplies Organization
While we knew we would be forming new relationships due to our child’s trach, we had no
idea we would know our UPS delivery man so well.  We used to receive about 10-15 boxes
a month for trach/vent supplies alone. Therefore, it is imperative to keep all these supplies
organized to ensure the best care for your child, but also not to drive you or your nurses
insane trying to find supplies amongst a room full of boxes:
• Storage of Supplies: To organize all of the trach/vent
supplies, we bought a few of these storage units that are
available at places like Target, Walmart, etc. We
preferred drawers with varying sizes. For example, we
use the large bottom drawer to store equipment
manuals, while the middle drawer stores some of the
emergency medications like Diastat, epi-Pens, etc. We
had one storage unit by our son’s bed (ex. suction
catheters, nebulizer supplies) and the other storage units
were (and still are) in his closet. Other families also use
shoe organizers to help organize all of the supplies. In
some of our son’s dresser drawers, we also use some
desktop organizers to organize some supplies like scissors,
hearing aids, trach care supplies, etc.
• Storage of “Extra” Supplies: Not all of the monthly
supplies would fit into these storage units. Therefore, we
stored “extra” supplies in bins and containers in another
bedroom closet. We preferred using these bins and
storage containers for the extra supplies because they
easily fit on existing closet shelves and other shelving
units we already had in our closets.

6.2. Home Supplies Organization (cont’d)
• Labelmaker: One of the best gifts we received was a
labelmaker (we asked for it for this very reason). While we
initially labeled drawers using some pen and tape, the writing
eventually wore off. With nurses in and out of our home, we
always wanted to be sure they knew where all of the supplies
were located. Therefore, we labeled all of our son’s storage
units, storage bins, storage containers, and equipment using a
labelmaker. Specifically, we use the Brother P-Touch
labelmaker. Not only does Brother carry an extra strong
adhesive tape, they carry a variety of colors and this
labelmaker also adds cute little graphics (ex. I use the ‘no
smoking’ graphic on the labels for the oxygen tanks). Drawers
and bins are labeled by “function” like:
 Suction catheters
 Manuals
 Emergency medications
 Feeding bags
 Suction containers.
There’s a trach/vent family that posted a short video (8 minutes) on how they used the above
storage and organizing concepts to organize all of their daughter’s supplies.

6.3. “General Administration” Organization
Most likely, due to the trach, your child will be visiting doctor(s) more often, qualify for
additional therapies, etc. Managing all the appointments and paperwork will be needed in
order to best advocate for your child.
Here are some helpful tips to help you manage (ex. not forget) all the appointments as well as
keep all the paperwork you will receive organized:
• Paperwork: You will accumulate a lot of paperwork that will need to
be kept for future use: doctor summaries, therapy sheets, insurance
explanation of benefits, supply delivery slips, etc. To give you an idea
of how much paperwork our son creates, our pediatrician said our
son generated more paperwork in one year than any other child in
his 25+ year career.  Retailers like Walmart carry inexpensive filing
boxes and manila folders that can help you organize all the
documentation. We have organized our son’s paperwork by
“functional area:” Pulmonology, Urology, Neurology, Occupational
Therapy, Respiratory Supplies, etc.
• Print/Copy/Fax Machine: Having an all-in-one machine has been
critical for an array of diverse communications: printing doctor
orders for nurses, test results, and faxing medical release documents,
letters of medical necessity, etc. While these machines can be
expensive, go to Resources to find ways to obtain these items for
less. It will save you much aggravation and time in the long run.
• Managing Appointments and Events: Our son has a very busy life:
followed by multiple specialists, various therapies, and strict
medication timelines. All of these events could not be managed on
paper due to unexpected changes, much less trying to track it all in
our heads. Thankfully, current technology can help in this area:
• Alarms: What piece of technology do we now carry with us
at all times? Our phones! To remember all of our son’s
medications, we have alarms set to go off on our phones
when they are due. That way, we can enjoy life without
having to look at clocks constantly.
Source: www.hp.com
Source: www.verizonwireless.com

6.3. “General Administration” Organization (cont’d)
• Managing Appointments and Events (cont’d):
• Reoccurring and Non-Reoccurring Events: While the alarm
functionality is great for medication reminders, there are
some “events” where we prefer to use other technology and
applications. These events include:
 Regular reminders when to order supplies with the
DME company
 Reminders to follow-up on in-process tasks (ex.
follow-up with pediatrician to ensure LOMN is signed,
or DME company received script to submit to
insurance company)
 Reminders for future events like replacing any
medications in the Emergency Bag before they expire
We use Microsoft Outlook’s Appointment functionality to
remind us of these events. There is a ‘pop-up reminder’
without having a sound alarm. And, you have the option of
setting the Appointment as re-occurring, for regularly
scheduled events, like ordering supplies.
• Appointments: For doctor appointments or other events
where someone else may be involved in the appointment (ex.
someone to drive), we use Microsoft Outlook’s Meeting
functionality. Just like the Appointment functionality, it also
allows you to ‘invite’ others to the event so that it’s on
everyone’s calendar and no one forgets. Plus, within the
Meeting and Appointment functionalities, there is a Reminder
that can be set. For example, if you need referrals for any
appointments, you can set the Reminder for one week so that
it pops up one week prior to the appointment, to remind you
to call for a referral (if applicable).
We happen to use Microsoft Outlook but any email package will
work. Having the email package sync between your mobile phone
and your laptop/tablet is preferred so that you always have an up-to-date
contact list and calendar with you. This is especially helpful
when making the next follow-up appointment during check out of
the current appointment.

Bringing home trach vent child v2014 v01pdf

Bringing home trach vent child v2014 v01pdf

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