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….

©2014 Laura Elliott

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

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

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.

Our Poem Given to the A.I. duPont Hospital for Children NICU on August 28, 2007 (Discharge # 1)

©2014 Laura Elliott ii

1. Federal & State Assistance Programs

1.1. Federal Funding

©2014 Laura Elliott 01-01

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….

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, 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)

Source: www.socialsecurity.gov



http://www.phlp.org/wp-content/uploads/2012/02/PH-95-guide.pdf

http://www.ssa.gov/ssi/

http://www.ssa.gov/pubs/10026.html

http://www.ssa.gov/ssi/


1.1. Federal Funding (cont’d)


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.

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


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)


• 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

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:

Source: www.springbrook-farm.org

http://www.thearc.org/

http://www.usvariety.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)



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

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:


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” • 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.


Here are some key “lessons” we learned with our home equipment:

02-04

http://www.feedingtubeawareness.org/TubeFeedingAtSchool.html


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.


http://www.devilbisshealthcare.com/devilbiss-news/144-devilbiss-heawithout-the-added-noise-that-can-often-intensify-feelings-of-discomfort-the-devilbiss-vacu-aide-qsu-quickly-efficiently-and-safely-evacuates-secretions-from-a-patients-airway-eliminating-thelthcare-introduces-the-quiet-nasal-pillow-system

http://www.utilitybillassistance.com/html/pennsylvania_utility_bill_assi.html


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


http://www.passy-muir.com/



http://www.tracoe.com/products.html



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 use, not inline)

For suctioning secretions from trach 300

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).


http://www.allegromedical.com/wound-care-c541/mepilex-self-adherent-absorbent-dressing-sterile-p190941.html

http://www.vitalitymedical.com/sims-portex-thermovent-heat-and-moisture-exchanger-t-hme.html

http://www.teleflex.com/en/usa/productAreas/respiratory/productGroups/passive-humidification/products/gibeck-HMEs/index.html



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-Key or Mini)

For administering all nutrition and medications to the child

1

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).




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

http://www.allheart.com/category.aspx?c=1009&cmpid=SEGOO&gclid=CPvhg-HfurICFQJx4AodX2YAcg



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.

2.6. Home Supplies - General (cont’d)

http://www.amazon.com/Kimberly-Clark-Childs-Stretchable-Earloops-Latex/dp/B001RRRVMU

http://www.freesignage.com/osha_danger_signs.php


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.


http://agirlandhertube.blogspot.com/2013/10/preparing-for-emergencies-of-non.html


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.


http://www.vitalitymedical.com/johnson-and-johnson-elastikon-elastic-tape.html


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: A soft copy of a DME order form template is attached.

Example DME Order Tracking Form



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.


http://www.tracheostomy.com/care/suction.htm

http://www.amazon.com/Ambu-276-000-001-Res-Cue-Pump/dp/B000QS1RCG/ref=sr_1_2?ie=UTF8&qid=1380813770&sr=8-2&keywords=manual+suction+pump



3. Trach Care

03-01 ©2014 Laura Elliott

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:

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.

• 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.

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 have an odor)

Every shift

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


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.

3.2. Weekly Care Plan

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.

http://www.babybubadoo.com/changing_wrap.html

http://www.babybubadoo.com/changing_wrap.html

3. Trach Care


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.

3.4. Trach Tube Cleaning

3. Trach Care


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. 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)

3.5. Protecting Our Trach/Vent Children

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.

3.5.1. Vaccines

Source: www.cdc.gov

03-06

http://www.cdc.gov/vaccines/acip/committee/guidance/vac-abbrev.html

3. Trach Care


3.5. Protecting Our Trach/Vent Children (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.

3.5.1. Vaccines (cont’d)

03-07

RSV Admittance Room – February 2013

The inCourage System (John’s Percussion Vest)

Source: www.respirtech.com

Our RSV Medications, and Orapred (not shown)

3. Trach Care



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.”

3.5.1. Vaccines (cont’d)

Source: www.kidshealth.org

03-08

https://www.synagis.com/

https://www.synagis.com/

http://www.papasofpreemies.com/2013/03/no-sleep-till-synagis.html

3. Trach Care



• 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.

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:

03-09

https://www.phonesoap.com/

3. Trach Care



• 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.

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)

03-10

Source: Image by McGrath-Morrow and Collaco via Advance Web

http://handtohold.org/resources/helpful-articles/5-myths-rsv/

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:

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.

• 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

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

4. G-Tube Care

You can add the above activities to the checklist supplied in the Trach Care section.


There were a few activities we did on a weekly basis but this one was most important to us:

4.2. Weekly Care Plan

• 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

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”

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.

4.4. GI Issues


Source: WebMD


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.

http://articles.complexchild.com/march2012/00368.html

http://mommiesofmiracles.com/what-is-home-health/


• 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?


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:

5.1. Home Care Nurse Selection (cont’d)

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.

• 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.



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:

Source: www.bayada.com

• 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.



5.4. Nursing Considerations (cont’d)

National Nurses Week

One of My Many Cupcakes

Source: www.bayada.com

• 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.



5.4. Nursing Considerations (cont’d)

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.

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.


5.5. Privacy (cont’d)


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. 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: (cont’d)


6.1. Home Equipment Organization (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.

http://www.patchworkpeddler.com/multi_use_straps_s/1820.htm

http://www.amazon.com/Dale%C2%A9-Foley-Catheter-Holder-DAL316/dp/B000TXVQ24/ref=sr_1_2?ie=UTF8&qid=1367763495&sr=8-2&keywords=catheter+leg+strap

http://www.amazon.com/Dale%C2%A9-Foley-Catheter-Holder-DAL316/dp/B000TXVQ24/ref=sr_1_2?ie=UTF8&qid=1367763495&sr=8-2&keywords=catheter+leg+strap

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.


6.1. Home Equipment Organization (cont’d)


http://justinandjennymclelland.blogspot.com/2013/02/how-to-prepare-your-house-for-trach-baby.html


6.2. Home Supplies Organization

• 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.

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:



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.

http://www.youtube.com/watch?v=hV9SkKpFTXo


6.3. “General Administration” Organization

• 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.

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:


Source: www.verizonwireless.com

Source: www.hp.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.


7. Emergency Preparedness


At one point or another, you will most likely encounter some sort of ‘emergency’ situation or visit the Emergency Room (ER). Some “emergencies” may not involve an ER. You may be out at the store with your child and the trach comes out, a trach tie becomes loose, etc. We try to avoid the ER as much as possible (everyone’s sick there!). Sometimes though, you don’t have a choice – you need to take your child there. 7.1. Emergency Bag

• Size: It’s just a fact, you will need a bag large enough to hold all of those supplies. While our son was trached and vented, we used a large duffel bag.

• Color: Red is the traditional emergency service warning, which is why we wanted the color red.

• Organization: You will be carrying lots of supplies, so try to select a bag with a lot of pockets. If you can’t find any with pockets, you can always use clear bags (gallon or larger) to organize your supplies. The clear bags are helpful so that you can immediately see what’s inside the bag.

Some of the other commonly used bags include: • Large Utility Tote by Thirty-One: Not only is this bag large, but you

can purchase different types of organizers for it. And, it comes in a few different colors, patterns, etc.

• Okkatots Diaper Bag Backpack: This backpack is also large and has a lot of different pockets to help organize supplies, etc.

• LL Bean Personal Organizer: This toiletry bag is large with a lot of storage pockets.

The respiratory team has already provided you a list of the emergency equipment and supplies you need to have with you at all times. And, they have provided you some ideas on what other parents/caregivers have used for emergency bags. Here are some considerations for your emergency bag selection:

Large Utility Tote by Thirty-One

Okkatots Diaper Bag Backpack

http://www.thirtyonegifts.com/catalog/Product/28/



http://www.amazon.com/Okkatots-Travel-Baby-Depot-Backpack/dp/B007A3GU72/ref=sr_1_1?ie=UTF8&qid=1359489130&sr=8-1&keywords=okkatots

http://www.llbean.com/llb/shop/73884?page=personal-organizer-toiletry-bag-family-size&subrnd=0



7.1. Emergency Bag (cont’d) Some of the other commonly used bags include: (cont’d) • Fishing Tackle Bags: Tackle bags have a lot of pockets to organize all

of the trach supplies.

• Medical Bags: Why not use what the medics use? These first response bags are roomy inside and durable.

As mentioned in Trach Care, you (or designated person like a nurse) will want to review your Emergency Bag at least once a day. While this may seem tedious, when you are in an emergency situation, you will be thankful that those items were there for you.

http://www.walmart.com/ip/Plano-Large-Bass-Fish-Scene-Bag/16351088

http://www.galls.com/bags-organizers



As much as we don’t want to think about it, it’s important to think about and prepare for emergency situations. You will have a better understanding of what we mean after reading one of our emergency experiences.

About 36 hours after our son was discharged from the NICU, he started having respiratory problems: wheezing, increased oxygen needs, etc. We called pulmonology and discussed that if it got worse, we should call 911. BUT, because of where we lived, we needed to go to Hospital Y, not Hospital X (which was closest to us), because Hospital X did not support trach patients. (NOTE: We live one hour from any children’s hospital.) In the early evening, our son got worse and we called 911. When they arrived 10-15 minutes later, we discussed the issues our son was having, shared the medication sheets to understand what medications he was taking (which they said was extremely helpful), and that it made sense to take our son to Hospital Y. But, since it was not the closest hospital, special approval was required so additional time was needed for that. Once the approval was given, one of us rode in the ambulance with our son and the other drove to the hospital to meet them there. Once we arrived at Hospital Y, we were put in an ER room, and met with the attending doctor and respiratory therapist. One of the pediatric doctors came down and talked with us. They gave our son some nebulizer treatments, and while those were going, they all left the room. Suddenly, all the alarms started going off because our son’s O2 saturation levels were dropping quickly. I looked at our son and he was going blue. I ran into the hallway and screamed he was turning blue and that’s when doctors and nurses finally came into the room. At this point, our son was gray and unresponsive. They were trying to get him to cough, but he was not responding. There was no ambu bag in the room to give him any oxygen. My husband then went into our Emergency Bag, took out our ambu bag, hooked it up to the oxygen in the room, cranked up the oxygen to 8L, and started bagging him to give him oxygen. If he hadn’t done that, this story would have a much different ending. Once our son was stable, he was transferred from Hospital Y to A.I. duPont Hospital for Children for another week before Discharge # 2.

7.2. Emergency Situations



Before going further, it’s important to note that we did formalize a complaint with Hospital Y and it was addressed. Based on our experience, we have a specific method to handle emergencies that have prevented this situation from occurring again: • Know/Select a Preferred Hospital: Not all hospitals are

created equal. For example, the hospital closest to our house does not support trachs. Therefore, it’s important to know which hospital(s) in your area can support and care for your child in the case of an emergency. And, if the hospital that can support your child is not the closest to your home, the paramedics may have to obtain approval before leaving to the other hospital. This approval adds extra time, so keep that in mind.

• Define Criteria for ER: We defined our own criteria that our son needs to meet to take him to the ER. Specifically, this criteria allows us to drive our son ourselves to A. I. duPont Hospital for Children (hour away from us) because they have:

All our son’s medical records and history. Pediatric specialists available. Right equipment and supplies available for children. Ability to handle complex cases (ex. trach).

• Call 911 for Exceeded Criteria: If our son’s current situation

is above and beyond the defined criteria, we call 911. As of yet, we have not called 911 since that previous experience.

• Treat at Home if Below Criteria: As any other typical child, we will care for our son at home with all the proper equipment and medications (ex. nebulizer treatments, possible antibiotic, etc.) to minimize him being exposed to any more germs, or exposing other children to his virus.

7.2. Emergency Situations (cont’d)



Based on our experience, we have a specific method to handle emergencies that have prevented this situation from occurring again: (cont’d) • Medication Sheets Available: We always ensure we have an

updated list of our son’s medications with us when we go to the ER (and have on hand in case of 911 call). That way, all paramedics, doctors, etc. will know what he’s currently taking to ensure no conflicting medications are given. Since many of our children have frequent medication changes, you may want to consider maintaining a soft copy (ex. Excel, Word) and update as changes occur. After you make changes, ensure you put a new copy in your Emergency Bag (and remove the old one) and any other place in your home (ex. by nurse papers, medicine cabinet). One of the feeding tube websites offers templates to assist caregivers in starting to organize all this information. Some parents/caregivers carry USB ports with all the information. There are medical bracelets with USB ports specifically for this reason. But, not all paramedics and hospitals support this functionality so you may want to check that out before investing in one. If your child has had a considerable number of MRIs, CT scans, etc. that are integral to your child’s care, include these in your Emergency Bag, too (can call doctor’s office or hospital for copies).

• Ambulances Can Take Time: Depending on your location, the number of ambulances your local firehouse or EMS has, and ambulance(s)’ locations (might be at another home), the ambulance may take some time (up to 15-20 minutes) to arrive at your home. We learned our ambulance does take a while to come to our house so we had to include that in our “ER Criteria.”

• Refill Prescriptions: If you and your child will be away from home for an extended period of time (ex. evacuation due to a hurricane), ensure you have a 30 day supply (or as much as possible based on insurance). Using a national pharmacy like Walgreens is helpful in these situations, as you can be almost anywhere and get a prescription filled.

7.2. Emergency Situations (cont’d)

http://www.feedingtubeawareness.org/Blog.html?entry=the-what-happens-if-i

http://medicalhistorybracelet.com/

http://medicalhistorybracelet.com/



While it’s an annoyance when the power goes out, it’s even more frustrating when you have a trach/vent child. Make sure you have a working flashlight in any room where your child might be. The last thing you want to do is knock over the ventilator, which can unexpectedly decannulate your child. As explained during your training, you can use your back-up batteries for about 5-6 hours or possibly longer (depending on their battery life). And, if your back-up batteries start to lose their charge, you can take your child to the local ER to use their power.

7.3. Power Outages

Shortly after our son came home, we decided to purchase a generator (by Generac). We wanted to avoid the ER as much as possible, especially during cold/flu/RSV season. And, even though we live in a newer development, the power tends to go out during storms. While there are other portable generators out there, we decided to purchase a permanent one that automatically started when the power went out and backed up most of the home (and shuts off automatically when the power returns). One of our main concerns was if the power went out when only one of us was home, that person would not be able to set up a portable generator since our son could not be left alone. Also, if the power goes out, usually that means the weather is bad outside and we did not want to deal with trying to start a portable generator with high winds, horizontal rain, or hail. This permanent generator was very expensive (portable generators are less). But, we knew our son would always be dependent on technology/equipment for his lifetime so it was worth the investment for us. We have had power outages as long as nine hours since the generator was installed, which meant the we didn’t have to go to the ER and expose our son to any viruses.

Source: www.generac.com

Source: www.generac.com



Of all the different training received in the hospital, it’s every single trach/vent families’ hope to never have to perform CPR on their child. We were fortunate enough to not have this experience but we know other families that have needed to perform CPR in order to save their child’s life. Before we left the hospital with our son, we ensured we were proficient in the following:

7.4. Cardiopulmonary Resuscitation (CPR)

• “Trach CPR” : One of the criteria for our son’s discharge was demonstrating our ability to perform “trach CPR.” Just as you would with “regular” CPR, it’s important to revisit this training to ensure you maintain your skills. Only you can determine the frequency of this training. Cincinnati Children’s Hospital has posted a video specific to CPR and rescue breathing for children with trachs (see picture to right). Phoenix Children’s Hospital has a great one-page sheet on how to perform “trach CPR” that you may want to have as a reference in your child’s bedroom, etc. Another great one-page sheet from Maxishare is also available. The travel card below is perfect to place in your Emergency Bag.

Source: Cincinnati Children’s

http://www.cincinnatichildrens.org/health/c/child-trach-cpr/

http://www.phoenixchildrens.com/sites/default/files/health-information/the-emily-center/child-health-topics/handouts/CPR-Child-Trach-400.pdf

http://www.maxishare.com/SearchEngineCatalog/lifesaver-cpr-guide-sheet-for-infants-and-children-with-a-trach-english-101501.htm


7.4. Cardiopulmonary Resuscitation (CPR) (cont’d)


• “Regular” CPR: While we were not required to take this CPR course, it was highly recommended to take the course so we did. KidsHealth provides a very informative section on CPR. Nearby hospitals and your local chapters of the American Heart Association and the American Red Cross are good resources for finding a CPR course in your area.

Source: University of WA

http://kidshealth.org/parent/firstaid_safe/emergencies/cpr.html

http://www.heart.org/HEARTORG/CPRAndECC/CPR_UCM_001118_SubHomePage.jsp



http://www.redcross.org/lp/cpr-aed-firstaid?gclid=CMbhtrCenLkCFYyi4AodXlEAuw

• Kid Kart Stroller: Some families use the Kid Kart Stroller, which is a pediatric wheelchair. I have heard mixed reviews on whether or not this stroller can truly hold all of the equipment. To obtain this stroller, a letter of medical necessity (LOMN) from your doctor will be required as well as an appointment with a physical therapist to take measurements, determine which accessories need to be ordered, etc. Once the LOMN is completed and the physical therapist has put the order together, you will need to have them submit this information to your DME company for insurance approval. Delivery timeframes for equipment like this can be lengthy so if you decide on this stroller, you will want to get the process started as soon as possible.

• Ottobock Kimba Stroller: The families that did not like the Kid Kart usually preferred this stroller. It looks less like a wheelchair and many families thought it was made better than a Kid Kart (we also had a Kid Kart and we have to agree about the Kid Kart’s “quality” challenges). Since this stroller is also considered a pediatric wheelchair, the ordering process is similar to the Kid Kart’s ordering process (ex. doctor’s script, physical therapist appointment for measurements).

• Baby Trend Sit N Stand: This is what we used while our son was trached. Our son was an infant and decannulated when he was one so this worked well for us. Our son was in a baby carrier in one seat and the vent was in the other seat. The suction machine hung over the handle bars. You can get this type of stroller at any baby store, Walmart, etc.

8. Travelling with Your Child

8.1. Stroller


Travelling with your child is going to take a lot more effort than with a typical child. Besides remembering toys, diapers, extra clothes, etc., you have a lot of other items to remember: ventilator (if needed), oxygen (if needed), suction machine, Emergency Bag, medications, etc. We still remember the first appointment our son had to go to after he got home from the hospital. It took an hour to prepare for it!

One of the first questions asked after a child is trached is, “How am I going to carry all of this equipment?” Here are some potential options for you:

• Maclaren: Many are probably familiar with this British stroller company. They are known for making safe and durable strollers, yet stylish and hip. The key thing here is to select a stroller with lots of pockets to hold all the equipment.

• Quinny Freestyle 4XL: This stroller has also been used by other families. These families like its sturdiness, functionality, and it’s easy to pull apart and put back together. The frame is aluminum which makes it lighter. But, I believe this stroller is only available in Canada. But, you can search on-line to see if it’s available in the U.S.

• Contours Options LT Tandem Stroller: Others have used this stroller with the car seat adaptor. Families could turn their child in any direction, depending on what was going on with the child at the time.

• Thomashilfen EASyS Strollers: This stroller looks less like a wheelchair. The ordering process is similar to the Kid Kart’s ordering process (ex. doctor’s script, physical therapist appointment for measurements).

• Joovy Caboose: This is a standard stroller you can find at Walmart and other retailers. This stroller (not pictured) has a “triple” model: two seats and a spot for standing. Parents hang the vent on the handles that the standing child would use, and stack the suction, pulse ox, and other equipment on the seat for the second child.

• Zippie Voyage: Other families have commented that the attachments for this stroller hold and support the ventilator, (both LTV and Trilogy) suction machine, etc., very well. The ordering process is similar to the Kid Kart’s ordering process (ex. doctor’s script, physical therapist appointment for measurements).



To read about other options and opinions on strollers for trached children, we suggest you visit some of the trach-related websites and view the discussion boards on this topic or go on their Facebook pages (see Resources for more information about these websites) and post a question about strollers used by other families with trach/vent children.

8.1. Stroller (cont’d)

• What is the best vehicle for my child’s travel? The answers to the questions below will most likely “drive” (haha!) the vehicle choice for travel. A convertible is probably not the right vehicle. Besides the size, you also want to consider the “comfort” of the vehicle for your child. Since heat can impact our trached children’s breathing, you may want to ensure your vehicle has working air conditioning.

• What equipment needs to be near the child?: For example, if your child is trached/vented, the ventilator and suction machine need to be near your child as well as the Emergency Bag and all must be easily accessible.

• Does someone need to be sitting next to your child or always be caring for the child during the time in the vehicle?: Since your child is trached and perhaps vented, you, the nurse, or another caregiver will need to be next to your child to suction them, etc. Your child will most likely need to be in a middle car seat with equipment on one side and the nurse/caregiver on the other side.

• Does your child need any special positioning needs for their car seat?: For example, if they can’t hold up their head, maybe a special collar like the Hensinger or Headmaster collar is needed. You can follow up with your doctor about any special positioning equipment.


8.2. Local Travel


You need to consider the vehicle set-up for caring for your child. The vehicle choice and set-up considerations include:

Depending on the answers to these questions, the number of people you bring with you to appointments, family events, etc. may need to be limited due to space constraints in your vehicle. Or, maybe you need to ensure you always take a specific vehicle to any commitment you have when your child will need to come.



8.2. Local Travel (cont’d)

There’s definitely a lot to remember when travelling. If you are concerned about forgetting something, make a checklist. We are all busy people and it’s hard to remember everything. But, it can be a life or death situation if anything is forgotten for your child. You don’t want to learn the value of car chargers and spares the hard way. We created checklists which have evolved over time (a sample is pictured on the right). We also included a soft copy of the checklist below that you can use and modify for your personal use. Much of this local travel may be related to doctors’ appointments for your child. Depending on your state, your medical assistance may reimburse mileage, tolls, and parking related to these appointments (ex. applicable in PA). Check with your medical assistance provider for details.

With all of this equipment, you are going to need extra space to load and unload your child and his/her equipment. Your child will most likely qualify for handicapped parking due to their assistive device (ex. ventilator, suction machine, etc.), oxygen, or compromised lung condition. You want to check your state’s handicap parking eligibility requirements because it can take a few weeks to obtain a handicap placard.


• Angel Flights: Many of our trach-vent children are complex and need specialized care. Unfortunately, we don’t always live near the specialists. Air Charity Network is a non-profit that provides free air transportation for families in need of these specialized healthcare facilities. Miracle Flights for Kids is another non-profit that flies children needing medical treatment or seeking out a second opinion not available in their own hometown. (a friend of mine has used them)

• CARES Child Aviation Restraint: If your child requires a brace to provide upper body support in an airplane seat, there is a new harness available. An FAA Exemption will be required so you will need to ensure this process completes prior to your trip.

8.3. Out-of-Town Travel


Source: www.kidsflysafe.com

We never travelled out-of-town (i.e., involving an airport, plane, etc.) with our son. Therefore, we don’t have any personal experience to offer. But, we recommend a few resources for you if you are considering travel on a plane: • Transportation Security Administration (TSA): The TSA

provides specific recommendations for people travelling with medical conditions.

• Aaron’s Tracheostomy Page: This website has a dedicated section to travel as well as including other caregivers’ personal experiences.

• The Friendship Circle: This website has a couple of good blog entries on travel:

General Travel Guide: http://blog.friendshipcircle.org/2012/07/20/a-comprehensive-guide-to-special-needs-travel/

Airport Travel: http://blog.friendshipcircle.org/2012/05/03/airports-and-special-needs-travel-a-complete-guide/

http://www.aircharitynetwork.org/

http://www.miracleflights.org/

http://www.amazon.com/Child-Airplane-Travel-Harness-Restraint/dp/B0012E4FV8

http://www.amazon.com/Child-Airplane-Travel-Harness-Restraint/dp/B0012E4FV8

http://www.tracheostomy.com/

http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions



http://www.friendshipcircle.org/

http://blog.friendshipcircle.org/2012/07/20/a-comprehensive-guide-to-special-needs-travel/













http://blog.friendshipcircle.org/2012/05/03/airports-and-special-needs-travel-a-complete-guide/
















9. Insurance

Your insurance company(s) are going to play a very critical part in your child’s life because they are going to help pay for the critical care, equipment, supplies, and therapies your child needs in order to develop and maintain a good quality of life. With healthcare costs continuing to rise, there is more scrutiny on new services and equipment. Whether we like it or not, it’s a fact and we all must deal with it. You will have plenty of arguments and fights to get the services and/or equipment your child needs. But, there are a few things we have learned in order to increase your success rate on obtaining services, equipment, and supplies.

Here are some helpful tips when talking with the insurance company about your child: • Focus on the Challenges: When the insurance company

representative asks how your child is doing, focus on your child’s challenges. For example, are they oxygen-dependent? Are they not able to crawl or walk? Can they hear? You need the insurance company to help your child with their challenges, not their successes.

• Facts, Not Emotions: Emotions don’t prove a specific need, facts do. Therefore, you will want to ensure you have the proper facts (ex. doctor’s letters, nurses notes) to prove your child’s need.

• Answer the Question ONLY: You only need to answer the question that you were asked about your child – no more, no less.

• Everything in Writing: If there are any verbal statements about coverage, approval, or denial, ask them for a written letter stating such.

9.1. Discussions with Insurance Companies

You will also go through several appeal processes in order to obtain the home care nursing, equipment, therapy, or supplies your child needs in the future. While each insurance company’s appeal process is different, it should be somewhat similar to this (after an initial denial): • 1st Level Appeal: You will file a 1st level appeal once you receive the denial notice

from your insurance company. Once the appeal is received with any supportive documentation, it’s usually only one, or maybe two, medical directors that will review the appeal. If you don’t win the 1st level appeal, then you can go on to the next step, the 2nd Level Appeal.

9.2. Appeals


• Letters of Employment: When you provide your letter of

employment, ensure that you include all travel time, work time, overtime, and on-call time. And, if there is any chance of working on the weekends, ensure it’s included. If there are two caregivers that work, it does seem that the chances of a reduction in nursing hours is less.

• Support Documentation: Gather support documentation from the right parties, mainly doctors, that support your need for the denied request. You need to make sure you give your doctor(s) plenty of time to write the letter. For example, once you receive the initial denial, go ahead and contact your doctor(s) for letters, so that you have them by the time you need to provide them to the insurance company. If you can, draft the letter for the doctor(s) to save them time. While this may not be possible for your first exposure to appeals, you will soon collect many letters of medical necessity and other documentation that soon you will be able to write them. You will understand how to convey your need and how without the service, your child will suffer. You will have the best perspective since you know personally how this denied service will impact your child. Your doctor(s) can tweak the letter(s) as necessary, sign it, and provide you a copy.

9.2. Appeals (cont’d)

9. Insurance


• 2nd Level Appeal: You will file a 2nd level appeal if you do not win your 1st level appeal. This appeal level involves a meeting amongst multiple doctors and other insurance staff – your attendance is optional. You can invite others to attend (ex. doctors, lawyer, etc.) as well as yourself. You can usually attend in person or over the phone. The team will review the appeal and any supportive documentation. If you don’t win the 2nd level appeal, then you can go to the next step, the 3rd Level Appeal.

• 3rd Level Appeal: This appeal may be handled a few different ways. This appeal may be handled by the state through a hearing or through a “neutral” vendor (“neutral” term used loosely since this vendor is paid by the insurance company). The state or vendor will review the appeal and all supportive documentation. Hopefully, you will win the appeal , but, if you lose the appeal, then this is the end of the road. You can contact your social worker, doctors, on-line resources, support groups, etc. to see if they have any other ideas on how to help you obtain what your child needs.

Here are some recommendations, from experience, that can help improve your chances of winning your appeal:


9. Insurance


• Stagger Support Documentation: Be methodical on what support documentation to share when. You do not want to share all of your support documentation during the 1st level appeal. If you lose the 1st level appeal, then you will not have any additional information to provide in the 2nd level appeal that can help sway the insurance company. You may want to consider a strategy like this:

1st Level Appeal: Little to no additional documentation.

2nd Level Appeal: Add letter from a non-medical professional (ex. therapist, social worker) and one doctor.

3rd Level Appeal: Add two, or more, letters from “impacting” doctors (i.e., the doctors most relevant to this request). This can be a neurologist, pulmonologist, orthopedist, etc.

• Manufacturer Documentation (for Equipment/Supplies): If

you are having problems obtaining approval for specific equipment or supplies, consider contacting the manufacturer. Remember, the manufacturer wants to make money so it’s in their best interest to help you. They might have support documentation to show their product’s effectiveness, etc.

• Appeal Filing Timing: While this is not related to winning an appeal, this method can help extend current services in case you lose your appeal (current services are usually not reduced until after appeal process is complete). For example, you usually have about 10 days to file an appeal. Don’t file the appeal on the day you receive the denial. Instead, file the appeal on the 9th day so you have those extra few days with your current service.

Here are some recommendations, from experience, that can help improve your chances of winning your appeal: (cont’d)

Source: www.passy-muir.com


9. Insurance


• MA Fiscal Year: You want to be aware of your state’s fiscal year. For example, if your state’s fiscal year starts in July, then the state’s MA budget will be replenished in July. Therefore, if you need to order equipment, etc., this is the time to do it (i.e., when there’s plenty of funding). If you try to obtain equipment, services, etc., towards the end of the fiscal year, there’s less money and you might increase the chances of a denial.

Here are some recommendations, from experience, that can help improve your chances of winning your appeal: (cont’d)

Appeals are a lot of work. But, remember, the squeaky wheel gets the oil.

• Aaron’s Tracheostomy Page Description: They state they are the Internet’s

leading tracheostomy resource since 1996. It couldn’t be more true.

Benefits: This is a great “one stop shopping” page for any information about trachs (ex. cares, networking, resources). The level of detail is extraordinary. It’s, by far, the best trach resource on the Internet. If you are looking for supplies, you can post your request on their Facebook page.

Location: On Facebook, at Tracheostomy or on the Internet, at www.tracheostomy.com

• Kids with Vents

Description: Online support group for parents of trached babies and children.

Benefits: All the group members are experienced trach/vent parents and can provide support and advice (and it’s good!) based on their experiences. They also have helpful links on their blog and Facebook page.

Location: On Facebook, at Kids with Vents or on the Internet, at http://kids-with-vents.blogspot.com/

• Moms of Trach Babies

Description: Online support group for parents of trached babies and children.

Benefits: All the group members are experienced trach/vent parents and can provide support and advice (and it’s good!) based on their experiences. They also host Global Tracheostomy Tube Awareness Week (every May).

Location: On Facebook, at Moms of Trach Babies

10. Resources

Social media has been one of the most important advancements for parents/caregivers of medically fragile children. Oftentimes, it was not easy to find resources or others in similar circumstances because your ability to leave the home was limited. And, you would feel alone. Now, support resources are at your fingertips. Here are some resources that might help support you and your child.

10.1. Trach/Vent Support/Advice


Here are some on-line support sites that we often found helpful:





http://www.mommiesofmiracles.com/Events/trach_week.php

http://kids-with-vents.blogspot.com/







10. Resources

10.1. Trach/Vent Support/Advice (cont’d) Here are some on-line support sites that we often found helpful: (cont’d)

• Trach Blogs Description: Many trach/vent families blog about

their trach/vent experiences. Benefits: It’s helpful to know there are other families

out there that can relate to your experience. It also allows you to still connect with other trach/vent families, even if you cannot leave the home.

Location: On Internet, at What Do You Do Dear?, Our Little Acorn, Compatibility with Joy-Trisomy 18, Little Micah, Zadie’s Journey, Confessions of a Sleep-Deprived Momma, Kayli Is Loving Life Trisomy Style, Your Curse Is My Miracle, Breathing for Bekah

• Passy-Muir

Description: Their goal is to provide information and education on the passy-muir speaking valve available to trached and vented patients, including children.

Benefits: They have a specific section dedicated to education pediatric products, like Toby Tracheasaurus, finger puppets, stickers, coloring books, etc.

Location: On Facebook, at Passy-Muir Tracheostomy & Ventilator Swallowing and Speaking Valves or on the Internet, at www.passy-muir.com

• Neotech Home Health Description: They are a medical supply company

located in California, specializing in supplies for the NICU, PICU, as well as trach patients.

Benefits: While they are a supply company, they share a lot of good articles on trach products, trach success stories, and most importantly, they hold contests for free trach products (ex. through Mommies of Miracles and Moms of Trach Babies).

Location: On Facebook, at Neotech Home Health or on the Internet, at www.neotechhomehealth.com

Source: www.passy-muir.com


http://www.whatdoyoudodear.com/

http://www.ourlittleacorn.com/

http://www.ourlittleacorn.com/

http://compatiblewithjoy-trisomy18.blogspot.com/




http://littlemicah.blogspot.com/

http://littlemicah.blogspot.com/

http://zadiesjourney.blogspot.com/

http://zadiesjourney.blogspot.com/

http://confessionsofasleepdeprivedmomma.blogspot.com/



http://www.trisomy18.blogspot.com/

http://yourcurseismymiracle.blogspot.com/

http://breathingforbekah.blogspot.com/2014/01/the-trach.html

http://breathingforbekah.blogspot.com/2014/01/the-trach.html





http://www.passy-muir.com/products_edu_ped




http://www.socks4surgery.com/

http://www.neotechhomehealth.com/




10. Resources


• PA Ventilator Assisted Children’s Home Program (PA only) Description: This program promotes high quality,

cost-effective care of the ventilator assisted child in the home and supports the family in coping with this extraordinary endeavor.

Benefits: They sometimes have extra supplies they can donate as well as offer additional respite care (i.e., funding to pay for additional nursing hours above and beyond the nursing hours you receive from your insurance company). While it’s not a lot of additional hours, it’s nice to have some extra hours for a much needed (and deserving) break.

Location: On Facebook, at Kids Home Vent, or on the Internet, at www.kidshome-vent.org (click on Respite link)

• Trach Books

Description: Mattie Breathes is a book (to be released Fall 2013) about a family’s journey with their son’s trach. Just Like You is more of a child’s book, about a little boy with a trach getting ready for his first day of preschool.

Benefits: Mattie Breathes can be helpful for families about to bring home their trached child. Just Like You can be used to introduce siblings and other children to trachs.

Location: On Facebook, at Mattie Breathes, or on the Internet, at Mattie Breathes or Just Like You

• Trach/Vent Stuff (Pinterest) Description: This is a Pinterest board containing

helpful tricks, hints, and tips for trach/vent parents as well as parents of tubies.

Benefits: There is no better teacher in the trach/vent world than another parent. I have the honor of knowing this parent and her tips are helpful.

Location: On Pinterest, at Trach/Vent (and maybe some tubie) Stuff


http://www.kidshome-vent.org/



http://mattiebreathes.bigcartel.com/product/mattie-breathes

http://www.tracheostomy.com/resources/books/just_like_you/

http://www.pinterest.com/mirandabradley4/trachvent-and-maybe-some-tubie-stuff/




10. Resources


• TrachCare (mainly MA) Description: Provides support and information to

parents, caregivers, and healthcare providers of children who have, or previously had, a tracheostomy and children who are on ventilator support.

Benefits: It was founded in 2004 by parents in Massachusetts who have children with trachs. You can’t learn from a better group of people.

Location: On the Internet, at www.trachcare.org


http://www.trachcare.org/


10. Resources

10.2. G-Tube Support/Advice Here are some on-line support sites that we often found helpful: (cont’d)

• Feeding Tube Awareness Description: The Feeding Tube Awareness

Foundation is dedicated to providing parents and caregivers with the information needed for day-to-day life with a tube fed child, including a guide introducing parents to tube feedings.

Benefits: This is the most complete, resourceful website I have found regarding feeding tubes. It provides how-to’s, resources, and personal success stories. They always sponsor a yearly event called Feeding Tube Awareness Week, which promotes the positive benefits of feeding tubes as well as educating the public on feeding tubes.

Location: On Facebook, at Feeding Tube Awareness or on the Internet, at www.feedingtubeawareness.org

• Tubie Friends

Description: They provide a stuffed friend with medical equipment mirroring the child's medical equipment. Their focus tends to be on feeding tubes but they will do other medical equipment like trachs, central lines, nasal cannulas, etc.

Benefits: Makes the entire process of getting medical equipment less scary for children (and parents) by having a “mirror” of them.

Location: On Facebook, at Tubie Friends or on the Internet, at www.tubiefriends.com

• Bummer Bears Description: Similar to Tubie Friends, they provide a

stuffed bear with a “bummers” (ex. open heart surgery) mirroring the child's “bummer.” Their focus tends to be on surgeries, but they will do custom bears.

Benefits: Makes the entire process of getting surgery less scary for children (and parents) by having a “mirror” of them.

Location: On Facebook, at Bummer Bears or on the Internet, at www.bummerbears.com

Seriously, is this not the cutest picture?

Source: www.tubiefriends.com


Mended Heart Bear Source: www.bummerbears.com

Source: www.feedingtubeawareness.org

http://www.feedingtubeawareness.org/

http://www.feedingtubeawareness.org/A_Parent_s_Guide_to_Tube_Feeding__Apr_2014.pdf

http://www.feedingtubeawareness.org/

http://www.tubiefriends.com/






http://www.bummerbears.com/

http://www.bummerbears.com/



10. Resources

10.2. G-Tube Support/Advice Here are some on-line support sites that we often found helpful: (cont’d)

• G-tube Blog Description: Many g-tube families blog about their

trach/vent experiences. Benefits: It’s helpful to know there are other families

out there that can relate to your experience. This blog also contains a lot of information for parents/caregivers of children with g-tubes, like other resources, supplies, glossary of terms, “g-tube basics,” etc. The blogger also started a group on Facebook called The Retcher’s Resource, a common issue associated with tube feeders.

Location: On Internet, at The Adventures of Beaner

• Enteral Feed Calculator Description: This app calculates the volume and

duration to feed an enteral-fed individual overnight based on what he or she has consumed via tube, bolus or drip and/or orally—during that day.

Benefits: It’s a quick and easy app to calculate your child’s enteral feed.

Location: On Internet, at iTunes


Source: theadventuresofbeaner.blogspot.com

http://adventuresofbeaner.blogspot.com/2013/08/the-basic-thoughts-for-g-tubes.html




http://adventuresofbeaner.blogspot.com/2013/01/growth-assessments.html

http://adventuresofbeaner.blogspot.com/2013/01/growth-assessments.html


https://itunes.apple.com/us/app/enteral-feed-calculator/id430218156?mt=8

https://itunes.apple.com/us/app/enteral-feed-calculator/id430218156?mt=8




10. Resources

10.3. General Support/Advice Here are some on-line support sites that we often found helpful: (cont’d)

• Mommies of Miracles Description: They are the largest online support

group in the world for mothers (any parent/caregiver) of children with special needs.

Benefits: Not only do you have a large pool of other parents to whom you can leverage their advice, they also conduct some product giveaways. Also, they have state MOMgroups, too.

Location: On Facebook, at Mommies of Miracles or on the Internet, at www.mommiesofmiracles.com

• Friendship Circle of Michigan Description: They provide assistance and support to

the families of children with special needs as well as to individuals and families struggling with addiction, isolation, and other crises. This is an international organization with local affiliates.

Benefits: Similar to Mommies of Miracles, there is a large group to leverage advice and support.

Location: On Facebook, at Friendship Circle of Michigan or on the Internet, at www.friendshipcircle.org

• KidsHealth (from Nemours) Description: They provide families with perspective,

advice, and comfort about a wide range of physical, emotional, and behavioral issues that affect children and teens. It’s the most-visited site on the Web devoted to children's health and development, from birth through the teen years.

Benefits: They cover a wide variety of topics. Besides general health questions, they offer advice on preparing little ones for surgery, and even recipes. And, they have sections tailored for parents, kids, teens, and even for educators.

Location: On Facebook, at KidsHealth or on the Internet, at www.kidshealth.com

http://kidshealth.org/parent/kh_misc/about.html ©2014 Laura Elliott

1 10-07

1

http://www.mommiesofmiracles.com/

http://www.mommiesofmiracles.com/momgroups/

http://www.mommiesofmiracles.com/momgroups/

http://www.mommiesofmiracles.com/



http://kidshealth.org/

http://www.kidshealth.com/

http://kidshealth.org/parent/kh_misc/about.html

http://kidshealth.org/parent/kh_misc/about.html

• Complex Child E-Magazine

Description: It’s a monthly online magazine written by parents of children with special healthcare needs and disabilities.

Benefits: Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials.

Location: On Facebook, at Complex Child E-Magazine or on the Internet, at www.complexchild.com

• Legal Rights Guidance Description: His law practice (in over 20 states)

offers families legal guidance and representation for children and adults with disabilities.

Benefits: Not only is his practice dedicated to children and adults with disabilities, he does a considerable amount of pro bono work (~ 75%). He also wrote a book about the rights of people with disabilities. I have seen him speak at multiple conferences.

Location: On the Internet, at www.josephromanolaw.com

• Socks 4 Surgery Description: Their goal is to improve children’s

surgery experience by keeping their feet warm, while keeping a personal belonging with them.

Benefits: It’s comforting for parents to have something from them in the OR with their child (i.e., almost watching over them). You can customize the wording on the socks (and onesies, too) with something like, “I know this trach….Will be a piece of cake!!”

Location: On Facebook, at Socks 4 Surgery or on the Internet, at www.socks4surgery.com

10. Resources

10.3. General Support/Advice (cont’d)


Here are some on-line support sites that we often found helpful: (cont’d)

1

Source: www.josephromanolaw.com

10-08


http://www.complexchild.com/



http://www.josephromanolaw.com/











• March of Dimes

Description: They provide all types of support for families with premature babies.

Benefits: They provide all types of support: support groups, information, advocacy, etc. Even if your child was not premature, many of the resources listed here can be used by any family with a medically fragile child. Their New Moms Need blog has a great weekly series called Delays and disabilities – how to get help for your child.

Location: On Facebook, at March of Dimes or on the Internet, at www.marchofdimes.com

• Papas of Preemies Description: This is a blog written by a father of a

premature son. Benefits: If there is one thing I have learned, it’s

fathers have different emotions, or grieving process, about their medically fragile child. This blog provides support for fathers, who are often not included in the support process. The Resource list in this blog is very thorough, and encompasses many of the blogs/resources I follow.

Location: On Facebook, at Papas of Preemies or on the Internet, at www.papasofpreemies.com

• Ronald McDonald House Description: Provides inexpensive housing, meals,

laundry facilities, etc. for families who have children undergoing treatment at local hospitals. It’s a “home away from home.”

Benefits: It allows families to be close to their child undergoing medical treatment for little to no cost. You can go to their website to find a local chapter.

Location: On Facebook, at Ronald McDonald House Charities or on the Internet, at www.rmhc.org

10. Resources





http://www.marchofdimes.com/



http://www.papasofpreemies.com/



http://www.rmhc.org/ronald-mcdonald-house

http://www.rmhc.org/






http://www.rmhc.org/ronald-mcdonald-house

• Hosts for Hospitals (Philadelphia only)

Description: Provides free lodging and support at volunteer-host homes as a caring response to the housing needs of patients and their families who come to the Greater Philadelphia area for specialized medical care.

Benefits: This is an alternative to the Ronald McDonald House, as it gets booked quickly.

Location: On Facebook, at Hosts for Hospitals or on the Internet, at www.hostsforhospitals.org

• The Sibling Support Project (Sibshops) Description: This is a national program that provides

support and information to siblings of children/adults with special needs.

Benefits: Siblings of children with special needs often have to make sacrifices due to their siblings’ needs (ex. doctor appt, emergency, etc.). This is a great opportunity for siblings to get together and receive the support they need. Families I know that participate in this program rave about it.

Location: On Facebook, at The Sibling Support Project or on the Internet, at www.siblingsupport.org

• Icing Smiles Description: Provides custom celebration cakes and

other treats to families impacted by the critical illness of a child.

Benefits: The cakes provided are stunning, high quality cakes. They will also make a cake for the sibling of a medically fragile child, as the sibling makes many sacrifices, too.

Location: On Facebook, at Icing Smiles, Inc. or on the Internet, at www.icingsmiles.org

10. Resources





http://www.hostsforhospitals.org/website/


http://www.hostsforhospitals.org/

http://www.siblingsupport.org/



http://www.icingsmiles.org/





http://www.hostsforhospitals.org/website/



• Tiny Superheroes

Description: Provides capes to tiny superheroes who exemplify strength and determination in light of the challenges they face.

Benefits: Aren’t all of our little ones superheroes? Location: On Facebook, at Tinysuperheroes or on

the Internet, at www.tinysuperheroes.com

• The Tiny Footprints Project Description: A group of photographers are matched

with local families to offer their services free of charge to parents of premature babies living in the NICU.

Benefits: Because the NICU experience is often overwhelming and stressful, photographs are often put on the backburner. This group ensures these precious moments of life are captured.

Location: On Facebook, at The Tiny Footprints Project or on the Internet, at www.thetinyfootprintsproject.com

10. Resources




10-11


http://tinysuperheroes.com/


http://www.tinysuperheroes.com/

http://www.thetinyfootprintsproject.com/


http://www.thetinyfootprintsproject.com/




Here are some on-line support sites that we often found helpful:

• Medical Supply Exchange

Description: This is the best site I have found where you can “exchange” medical supplies.

Benefits: There is a large pool of members and a diversity of equipment/supplies offered.

Location: On Facebook, at Medical Supply Exchange

• The Oley Foundation Description: This is the best site I have found where

you can donate or request enteral supplies. Benefits: There is a large inventory of enteral

equipment and supplies available and they are free. Location: On Internet, at www.oley.org

• Allegro Medical

Description: They are a medical supply company. Benefits: They have a large inventory of trach supplies,

“decent” prices (for medical supplies), and are delivered quickly (one warehouse in NJ).

Location: On Internet, at www.allegromedical.com

• Goodwill – Wilmington, DE Description: The Goodwill in Wilmington, DE now sells

refurbished medical equipment at a significant cost reduction.

Benefits: This is an affordable option to purchasing medical equipment that may have been denied by insurance, etc. You can even look at the inventory on-line.

Location: On Internet, at http://www.goodwillde.org/DME.asp

10. Resources

10.4. Equipment/Supplies As mentioned earlier, at one point or another, you will be in need of additional supplies to help care for your child. There are some great resources out there to help you obtain additional supplies at a minimal cost. Sites have been set up where others who may have extras (or no longer need) supplies can “sell” them to others. Please remember that the “seller” of supplies paid for by insurance can only be reimbursed for shipping. If you had to pay a co-pay, you are allowed to ask for that reimbursement. Also, it is ILLEGAL to offer, sell, or receive prescription medications from another person.


http://www.allegromedical.com/

http://www.oley.org/index.html

http://www.oley.org/





http://www.goodwillde.org/DME.asp









Here are some on-line support sites that we often found helpful: (cont’d) • Medical Supply and Formula Exchanges

Description: Feeding Tube Awareness provides a list of popular on-line exchanges for equipment, formula, etc.

Benefits: While the Medical Supply Exchange has always been helpful for us, if you cannot obtain what you need here, the other exchanges may increase your chances of obtaining what you need.

Location: On Internet, at Medical Supply and Formula Exchanges

• The Parker Lee Project Description: One of this non-profit’s objective is to help any

special needs family with supplies and equipment. They collect and distribute needed supplies and equipment at no cost to the families.

Benefits: Much needed supplies and equipment are available for no cost.

Location: On Internet, at theparkerleeproject.org or on Facebook, at The Parker Lee Project

• Project Sloopy Description: Similar to The Parker Lee Project, this organization’s

objective is to help any special needs family with medical supplies. They collect and distribute needed medical supplies at no cost to the families.

Benefits: Much needed supplies and equipment are available for no cost.

Location: On Internet, at projectsloopy.com or Facebook, at Project Sloopy

• A Leg Up for Kids Foundation (PA/DE only) Description: They are a non-profit organization that donates

strollers to children on ventilators through A.I. duPont Hospital for Children (Wilmington, DE), Children’s Hospital of Philadelphia (Philadelphia, PA), and Children’s Hospital of Pittsburgh (Pittsburgh, PA).

Benefits: The strollers are free!! Location: On Internet, at www.alegupforkids.org

10. Resources

10.4. Equipment/Supplies (cont’d)

http://www.feedingtubeawareness.org/SupplyExchanges.html

http://www.feedingtubeawareness.org/SupplyExchanges.html

http://theparkerleeproject.org/

http://theparkerleeproject.org/

http://projectsloopy.com/



http://www.alegupforkids.org/

http://www.alegupforkids.org/

Here are some on-line support sites that we often found helpful: (cont’d) • Trendy Trachs

Description: The standard disposable trach ties are not the cutest. So, if you want your child to be a fashionista, this is a great place to buy the most adorable trach ties. I wish I had discovered this website sooner! A mother with a trached son started this company.

Benefits: Not only are they adorable, but they are re-usable. Just keep in mind they are located in Canada (shipping might be more costly). Insurance won’t cover these trach ties.

Location: On Internet, at www.trendytrachs.com

• Trach Chain Description: There is a mother of a trached tween who makes and

sells custom trach chains. Benefits: If some trach-vent children have recurrent skin infections

due to trach ties or want something more dressy/custom, trach chains are an option. This mother creates trach chains by season, sports team, etc.

Location: On Facebook, at TrachItUp, or on the Internet at trachitup.mynetplanner.com

• Kira’s Kreations – G-Tube and Trach Pads Description: Trach pads have a similar issue to the above trach ties

– the 2-ply IV sponges would not be featured in a fashion show. But, these cute trach pads would be.

Benefits: Not only are they adorable, but they are re-usable. Insurance won’t cover these trach pads. I never used these so I’m not sure if there are any particular medical guidelines with re-usable trach pads.

Location: On Facebook, at Kira’s Kreations~G-Tube and Trach pads

• KangaRoo-tique Description: This is another site that offers cute and stylish trach

pads. Benefits: Not only are they adorable, but they are re-usable.

Insurance won’t cover these trach pads. I never used these so I’m not sure if there are any particular medical guidelines with re-usable trach pads.

Location: On Facebook, at KangaRoo-tique

10. Resources



http://trendytrachs.com/

http://trendytrachs.com/

http://www.trendytrachs.com/

http://trachitup.mynetplanner.com/

http://trachitup.mynetplanner.com/

Here are some on-line support sites that we often found helpful: (cont’d) • Amy’s Trach Ties

Description: Amy has a trach and makes adorable trach ties. Benefits: Not only are they adorable, but she also provides the

insurance code to submit the ties to your insurance company (if covered).

Location: On Facebook, at Amy’s Trach Ties, or on Internet, at www.amystrachties.com

10. Resources



http://www.amystrachties.com/

http://www.amystrachties.com/

Here are some on-line support sites that we often found helpful: (cont’d) • Belly Buttons

Description: This is site that offers cute and stylish g-tube pads and belts. Belly Buttons are made from a layer of "fun" fabric, a layer of flannel, and a layer of fleece. They are closed with a small strip of velcro. They also have specific ones for GJ tubes. You can also get a matching “belt” to cover the g-tube.

Benefits: Not only are they adorable, but they are re-usable. Location: On Facebook, at Belly Buttons or on the Internet, at

http://www.bellybuttonsandbelts.com/

• Patchwork Peddler Description: This site that offers cute and stylish g-tube pads and

g-tube belts. Benefits: Not only are they adorable, but they are re-usable. Location: On Facebook, at Patchwork Peddler or on Internet, at

www.patchworkpeddler.com

• Trendy Tubies Description: This is site that offers cute and stylish g-tube pads

with coordinating g-tube belts. Benefits: Not only are they adorable, but they are re-usable. Location: On Facebook at Trendy Tubies, or on Internet, at

www.trendytubies.com

• Tubie Whoobies – G-tube pads Description: This is site that offers cute and stylish g-tube pads I

think they have the cutest ones. I don’t think they have g-tube belts like other g-tube pad providers.

Benefits: Not only are they adorable, but they are re-usable. Location: On Facebook at Tubie Whoobies – G-tube pads, or on

Internet, at www.tubiewhoobies.com

• Pumpkin Packs Description: They provides backpacks for children and adults who

require feeding tubes or intravenous feeding. Benefits: These backpacks are fun and stylish and specially

modified to accommodate feeding pumps. They are ADORABLE! Location: On Facebook at Pumpkin Packs, or on Internet, at

www.pumpkinpacks.com

10. Resources





http://www.patchworkpeddler.com/




http://tubiewhoobies.com/

http://www.trendytubies.com/














http://www.tubiewhoobies.com/

http://www.pumpkinpacks.com/

http://www.pumpkinpacks.com/

Here are some on-line support sites that we often found helpful: (cont’d) • CoriSafe

Description: It’s a locking capsule which fits right over and encases the port to prevent children from tampering or disconnecting the port (ex. g-tube port).

Benefits: As soon as your child disconnects the tube multiple times and creates a mess, or worse (ex. have to go to hospital), you will understand the benefits.

Location: On Facebook, at CoriSafe or on the Internet, at http://www.corisafe.com/

10. Resources



http://www.corisafe.com/index.html

http://www.corisafe.com/




• On-line Auction/Classified Sites Description: Standard on-line websites where equipment and

supplies can be purchased. Benefits: You can review and buy on-line (for the most part) at a

lower price. Location: On Internet, at http://www.craigslist.org/about/sites/ http://www.ebay.com/ http://www.quibids.com/en/

• U.S. Food & Drug Administration (FDA) Medical Device Recalls Description: The FDA posts any medical device recalls on this site. Benefits: Your DME company may not notify you in a timely

fashion of any equipment or supply recalls. You can monitor this site as you see fit. There have been recalls for breathing circuits due to pinholes in the tubing.

Location: On Internet, at http://www.fda.gov/MedicalDevices/Safety/ListofRecalls/ucm334297.htm

• Reporting Medical Device Problems to the U.S. Food & Drug Administration (FDA)

Description: The FDA explains how you can report any problems you experience with medical devices.

Benefits: If you encounter an “adverse effect” with any specific medical device, this area of the FDA site explains how you can report the problem. It’s important that you report any problems, as many pediatric trials are done with a small number of patients and problems may not be detected until there is widespread use.

Location: On Internet, at http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm339672.htm

10. Resources



Source: www.fda.gov

10-18

http://www.craigslist.org/about/sites/



http://www.ebay.com/



http://www.quibids.com/en/



http://www.fda.gov/MedicalDevices/Safety/ListofRecalls/ucm334297.htm




http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm339672.htm






Here are some organizations that provide financial assistance for children with special needs:

• Fred’s Footsteps (Philadelphia only)

Description: Helps working families stay on their feet through a child's illness or injury. There are strict funding guidelines.

Benefits: Financial assistance from Fred’s Footsteps’ carries a maximum value of $10,000 over the course of one year for expenses like mortgage/rent, respite care, home modifications, etc.

Location: On Facebook, at Fred’s Footsteps or on the Internet, at www.fredsfootsteps.org

• Kelly Anne Dolan Memorial Fund (PA, DE, or NJ)

Description: Advocates for families with seriously ill, physically and cognitively challenged, or severely injured children through information and education.

Benefits: Financial assistance for needs not covered by insurance is provided to families whose children are living in or cared for in Pennsylvania, New Jersey, or Delaware. Payments are made directly to vendors.

Location: On Facebook, at Kelly Anne Dolan Memorial Fund or on the Internet, at https://dolanfund.org/

• Disabled Children’s Relief Fund Description: Provides children with disabilities with assistance to

obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery.

Benefits: As insurance companies tighten their budgets, this is another organization that can help ensure your child receives the equipment, therapy, etc. needed to thrive.

Location: On Internet, at http://www.dcrf.com

• The Kolbe Fund (Children’s Hospital of Philadelphia only) Description: Provides support for families who must travel in order

to obtain the best medical care for a child. Benefits: Since the Ronald McDonald House fills quickly, this

organization has partnerships with local hotels to pay for lodging for families that travel with their children to CHOP. They even provide gift cards for food from local vendors.

Location: On Facebook, at The Kolbe Fund or on the Internet, at www.thekolbefund.org

10. Resources

10.5. Financial Assistance


http://www.fredsfootsteps.org/

http://www.fredsfootsteps.org/

https://dolanfund.org/



http://www.dcrf.com/ordereze/default.aspx

http://www.dcrf.com/

http://www.dcrf.com/

http://www.thekolbefund.org/

http://www.thekolbefund.org/

The journey ahead of you will depend on your child’s medical needs and issues. Caring for a child with a trach is doable, but not always easy. We’ve had a long journey and will continue to have one as our son has a lot of medical issues and will continue to have them for the rest of his life. It’s difficult watching all that your child goes through in the ICU. When your child comes home, the “NICU/PICU hospital” journey ends and the “Home” journey begins. Our journey has not been easy. There have been more hospitalizations, ER visits, and “close calls.” But, there have also been happy times, including lots of smiles and laughter. There’s a five minute video made in August 2012 that shares what parents of children with disabilities wish they were told when their child was first diagnosed. In 2014, a short film (15 minutes) called, Trach, was produced, which follows the lives of three different children with trachs. This will provide you some insight into your new life at home. There are plenty of books out there to help us all through this journey. But, we wanted to share two pieces of advice: • Have a “rock.” • Find your “path to acceptance.” While going through this journey, the most important thing to have with you is your designated “rock.” This is someone that will be with you constantly throughout this journey. Your “rock” may be a spouse, partner, friend, or another family member. But, it has to be someone that is there for you and can experience what you experience. Your “rock” is the person that you can share the joy and pain of your journey. Having your “rock” will ensure you do not feel alone.

10. Resources

10.6. Emotional Support


10.6.1. Your “Rock”

10-20

http://www.youtube.com/watch?v=iZ78gHne0LM&feature=player_embedded

http://www.youtube.com/watch?v=iZ78gHne0LM&feature=player_embedded

http://vimeo.com/89501605

Friends are going to ask how they can help you. We recommend sharing the below poem with them to set the boundaries and expectations.

10. Resources

10.6.1 Your “Rock” (cont’d)


Source: Author Unknown

You also need to find your “path to acceptance.” Your child may not be the typical child that we all have in our minds. You can either live your life frustrated and angry at the world, asking, “why me?” or “this isn’t fair!” but the answer will always be we have no idea why this happened and life isn’t fair. Your child needs your love and support. The more time you spend with your child and learn about them, the more you will appreciate the accomplishments they make and the joy they will bring to you. And, this will bring you down the “path to acceptance.” It’s not an easy journey. You will have times of sadness when you see another typical child do something your child may not be able to do. There may be certain events that you may need to avoid for a while (ex. baby showers). But, as you accept your child and their possible differences, you will experience joy and happiness.

10.6.2. “Path to Acceptance”

10-21

http://www.bellaonline.com/ArticlesP/art38008.asp

http://www.mlive.com/living/grand-rapids/index.ssf/2013/09/for_parents_of_kids_with_speci_1.html

http://www.mlive.com/living/grand-rapids/index.ssf/2013/09/for_parents_of_kids_with_speci_1.html

You will want to find the support that can help you through this time:

10. Resources

10.6.3. Different Types of Support


• Family and Friends: While not all of them may understand what you are experiencing, they can support you in different ways. They can run errands, bring dinner, or get you out and have some fun. But, some friendships may change and it’s important to understand the “why” behind this.

Recommendation: If there is ANY WAY someone else can learn how to take care of your child (ex. suctioning, changing trach, etc.), definitely do that. All of our family members were hesitant to learn and we wished we pushed them more. While we had (and still do) a great group of nurses, we were/are limited in a lot of our activities.

• Books: Investigate different books that might help support you.

There are a ton of books out there. The key is to find the right book that will help you. It may take sometime at the bookstore, Amazon, etc., but it will be worth it. The book we especially liked was Special Kids Need Special Parents by Judith Loseff Lavin.

10-22

• Support Groups: Research some support groups in your community. You can find these groups through your doctors, nurses, social worker, religious institutions, Internet, county, ARC, friends, on-line resources, etc. There are many types of support groups so you need to find the best one that suits you. For example, we wanted a support group where we could talk to other families about finding all the possible opportunities our son could have, like funding, respite, schools, etc. We found a local group that meets monthly that does just that through a pediatrician.

• Nursing/Respite: Nursing and respite care may also be another type of support. We do not have any family members that can take care of our son so this is our only option to have a night out on our own. And, they have all become such good friends and support not only for our son, but also for us. To find respite options, you can talk to your social worker, your local ARC, doctors, etc.

http://www.parents.com/blogs/to-the-max/2013/09/05/autism/special-needs-moms/

http://www.friendshipcircle.org/blog/2013/09/03/10-reasons-special-needs-parents-should-join-a-support-group/

There are a few situations you will want to consider how you want to handle going forward:

10. Resources

10.6.4. Other Considerations


• Public Outings: Like it or not, people will stare at you and your child when you are out. You will want to think about how you want to handle it, which sometimes depends on the situation. Ignore and keep walking? Ask if they have a question? Typically, we just ignore and stare right back. But, if children pass by and ask, “Mommy, what’s wrong with him?”, we usually jump in and give a very high level explanation (ex. “John hurt his head so he’s a little different.”). Usually, the child says, “OK,” and goes on their merry way. Our goal is to promote tolerance and acceptance of those who are different.

• Friends with Typical Children: It’s natural that when you are with friends with typical children, they are going to talk about their typical children and their “challenges” (ex. potty training). And, they will make comments that can be frustrating and hurtful, like complaining about something that your child may not be able to do. Since they don’t have a special needs child, they don’t realize what will and will not hurt. How do you want to handle that? Get all upset? Tell them what life is like for you? Most likely, you need to educate your friends but you might want to protect yourself from those situations if it bothers you too much.

10-23

11. Homecoming Preparation

CONGRATULATIONS, YOUR CHILD IS COMING HOME!! This is such an exciting time…you no longer have to travel to the hospital to see your child. S/he will be in your own home! While the hospital will help coordinate the transportation of your child to your home (via ambulance, typically), it’s important that you and your home are ready for your child. Here’s a short checklist to ensure you are ready for the big homecoming:

11-01

Medications Filled: Ensure you have all the prescriptions for your child’s medications AND they are filled. It’s possible your local pharmacy can be out of a medication. Or, your child’s medication might only be available through a limited network of specialty pharmacies, like for Tobi (Tobramycin Inhalation Solution, a inhalation antibiotic used for treating some types of pneumonia). If it’s not possible to have all the medications filled prior to your child’s discharge, have another family member or friend get the prescription(s) filled while you are all coming home. This will ensure you have all required and as-needed medications available as soon as possible.

Emergency Bag Prepared: Ensure your Emergency Bag is stocked and ready to be used. See Emergency Preparedness for further details on the Emergency Bag.

Equipment Set Up and Working: It’s important that you have all your equipment at home, working, and you know how to use it. See Equipment and Supplies and Organizing “Everything” for more details.

Supplies Received and Organized: You will want to have all your respiratory supplies delivered and organized prior to your child’s arrival. While it takes time to organize the supplies, it will pay off for you in the long run, as time will be limited. Once you are home with your child, don’t you want to spend time with him/her instead of organizing your supplies? This is especially important for your nurses, as they need to know where the supplies are located, especially if they need them while you are not available (ex. sleeping). See Equipment and Supplies and Organizing “Everything” for more details.


Ambulance arriving at our house

The wonderful gentleman who brought our son home

Putting John in his crib for the very first time

http://www.pharma.us.novartis.com/products/tobi.shtml

11. Homecoming Preparation

Here’s a short checklist to ensure you are ready for the big homecoming: (cont’d)

11-02

Nursing Schedule Available and Paperwork Organized: You will want to understand your nursing coverage. For example, when our son first came home, we did not have overnight nursing that first night. Therefore, I had to ensure I slept in order to cover the night shift. Also, the nursing paperwork will need to be at the home for the nurses (ex. Plan of Care, Medication Sheets), if you are using an agency. See Home Care Nursing for more details.

Appropriate Companies/Organizations Contacted: You will want to contact your local firehouse, police, EMS, and electric company about your child. Supposedly, during emergencies like hurricanes, your family will have priority for any required rescues, etc. Also, if you lose power, supposedly your family will have higher priority than others to have power returned. It’s not clear if any of this actually happens but it’s worth a try.

Support Ready to Help: Line up some family members and/or friends to help you with the initial homecoming (and days afterwards). While they will not have the training yet to help care for your child, they can help in other ways: pick up medicine at the pharmacy, run to the store for diapers, give you some company, or make/provide dinner. My sister and brother-in-law each took a week off of work to help us during this time. I am forever grateful to them for their help. And, while my brother-in-law can’t handle blood or needles, he can sure make the best lasagna for dinner, while the leftovers can be frozen for future meals.

Think/Start/Update your Will/Trust: This needs to be done whether or not your child has any medical issues or not. While we knew this needed to be addressed, this was honestly not the highest priority item on our to-do list when our son came home. He required a significant amount of support and our will/trust had to be put on the backburner. But, during this time, we did talk with family members on our vision for John in the event we were not around to support him. We finally put this vision “on paper” when we had our wills/trusts updated when he was two.


Special Thanks

A special thanks to the following companies, organizations, and people who have contributed in one way or another to this guide:

A.I. duPont Hospital for Children

Dr. Aaron Chidekel (the only one who believed John could be decannulated in one year…and worked with us to make it happen in Sept. 2008)

Respiratory Therapists (The Respiratory Queen – Arlene, Donna, Suzanne, Jeri, Brian) NICU (Robin, Anna, Meg, Monica, Marie, Lori, Jemma, Tina, Kim, Jan, Cortney, Dr. Paul, Dr. Tuttle)

PICU (Diane, Nicole)

Bayada Pediatrics – Paoli Ginny, Shelley, Betty, Charlene, Semond, Jodi, Bonnie, Mary, Becky, Mike, Karen, Robina, Anna, Jill,

Paula, Abi, Michelle

Early Intervention Therapists Barbara, Janet, Terri, Diane, Laura, Kim

CHOP Neurological Support Group

Guide Reviewers

Margaret, Katie, Homer

Questions or Feedback? Contact me at [email protected]

One of my favorite pictures…this was taken about two days after he was discharged from his decannulation. He is

enjoying a beautiful fall day on the back deck…no trach, no ventilator, no suction machine.


bringing home trach vent child v2014 v01pdf

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