Care at Home Pediatric tracheostomy | Patient Education | UC Davis Children's Hospital

Home Care Nursing

Prior to hospital discharge the case manager will ask you if you are interested in having a home care nurse. The thought of having a stranger in the home may be uncomfortable for some people. Before you decline nursing services weigh the pros and cons of receiving extra help.

• Home care nurses cares will care for your child in your home environment and can administer medications, oral or tube feedings, and prescribed therapies.
• Your home care nurse will either be a registered nurse (RN) or licensed vocational nurse (LVN).
• If your assigned nurse does not have tracheostomy experience we always recommend to the home health agency that the nurse come to the hospital for training as a caregiver during your child’s hospital stay.
• Eligibility for nursing services will depend on your child’s insurance coverage and staff availability at the home health agency.

Tracheostomy supplier

Prior to hospital discharge a tracheostomy supplier will be assigned to you. Supplier assignments are dependent on your insurance carrier and where you live within California. Your first shipment of supplies will be delivered to the hospital so that we can make sure that the order is correct.

• The supplier will send a respiratory therapist or a representative to the hospital to meet with you and your child, and discuss the equipment that will be supplied at home after discharge. They will teach you how to use your equipment (ventilator, pulse oximeter, or tracheostomy mist machine). Safe handling practices and cleaning instructions for your equipment will be reviewed.
• You will be given the contact information for your supplier.
• Contact your supplier for issues with your tracheostomy supplies or to confirm delivery.

Delays in shipment are most likely related to insurance authorization and less likely due to an expired home supply order.

If you move addresses or change your phone number be sure to update your information with your supplier to avoid delays in shipment.

ENT and pulmonary clinic will work together to make sure you have the appropriate supplies and equipment.

• ENT clinic will manage all tracheostomy supplies, monitoring equipment, and suction equipment.
• Pulmonary clinic will manage all ventilators, nebulizing machines, and home oxygen.
• Please call the appropriate clinic if you need help with your supplies or equipment.

Tracheostomy home care equipment

Tracheostomy Supplies:

• Tracheostomy tube (current size)
• Tracheostomy tube (size smaller)
• Tracheostomy tie or collar
• Ambu or self-inflating bag with trach adapter and face mask
• Safety scissors with a curved edge
• Foam dressing
• Water-based lubricant such as Surgilube or K-Y jelly (Do not use oil-based lubricants like Vaseline)
• Syringe to deflate cuff (if needed)
• Hand sanitizer
• Mild soap (to clean neck during routine tracheostomy tube changes)
• Washcloth (wet and dry)

Suction equipment:

• Portable suction machine
• Stationary suction machine
• Suction canister
• Suction connection tubing
• Suction catheter
• Normal saline

Humidification system:  

• Heat Moisture Exchanger (HME)
• Warm mist humidity system
• Tracheostomy mask

Monitoring equipment:

• Pulse oximeter machine
• Pulse oximeter probes

Pulmonary equipment (if needed):

• Ventilator
• Oxygen
• Cough Assist
• IPV machine
• Nebulizer machine

Helpful hints: Your pulmonologist will order and renew the pulmonary equipment. All other tracheostomy related supplies will ordered and renewed by your otolaryngologist (Ear, Nose, and Throat specialist).

Tracheostomy clinic

The ENT Tracheostomy Program starts while you are in the hospital (inpatient) and continues after you leave the hospital when we see you in the clinic (outpatient).

Clinic visits

• You will follow up with the nurse practitioner in the ENT Tracheostomy clinic 1 to 2 weeks after hospital discharge. Then every 4 months for the first year and every 6 months for the following If extra visits are needed they will be scheduled.
• You will follow up with the ENT surgeon every 6 to 12 months.
• If your child needs a ventilator (long term breathing machine) at hospital discharge they will be followed up in the ENT Airway clinic by the nurse practitioner, pulmonologist, and/or ENT surgeon.

Airway evaluations

• A micro direct laryngoscopy and bronchoscopy (MDLB) is also referred to as an “airway evaluation”.
• Yearly evaluations are needed to monitor your child’s airway and change the size of the tracheostomy tube as your child The airway may experience changes as your child grows so it is important that we take a look every year.

Tracheostomy supplies

• While your child is the hospital the nurse practitioner will work with the discharge planner in ordering the tracheostomy supplies for home.
• Durable Medical Equipment or DME is a general term used to describe home health supplies.
• Your first set of supplies will be delivered to the hospital so that we can review the order and make sure that it is correct.
• The nurse practitioner will update and renew your tracheostomy supplies from time to time. It is important that you keep all follow-up visits in ENT Tracheostomy clinic to make sure that supplies remain up to date and to prevent delays in shipments to your home.

Activities of daily living

Bathing

Helpful Hint: If the HME gets wet during the bath, remove it, and throw it away.

Your child should be bathed every day. Take care to make sure that water does not enter the tracheostomy tube. Use an HME or speaking valve during bathing. Giving your child a tub bath or a sponge bath are popular options. Some parents opt to have their child stand in the shower while using a hand held showerhead. This ensures that the water stream stays below the level of the tracheostomy tube.

Swimming

• It is not safe for your child to swim while they have a tracheostomy tube.
• Using an HME, speaking valve, or tracheostomy caps are not safe to use for swimming.
• Your child should never be submerged under water.

Play

Helpful Hint: Get clearance from your pediatrician and ENT surgeon prior to starting any sports. If your child has a cardiologist they will need clearance from them as well. If your child has difficulty with endurance or breathing while engaged in exercise please follow up in ENT clinic. There may some things we can do to improve endurance.

• It is safe for your child to engage in age appropriate play activities.
• Infants can spend time on their tummy and their back without issue while supervised.
• Small children should be supervised during play by themselves or with peers to make sure that they do not try to remove their tracheostomy tube or place small objects inside the tube.
• Contact sports such as football or rugby are not safe for your child because of the possibility of tracheal injury.
• Sports such as golf, tennis, volleyball, or track and field activities have minimal contact and may be appropriate for your child.

School

• If your child is school-age they will need an aide in the classroom who can assist in tracheostomy care until your child is old enough to change their own tracheostomy tube. The aide can be a licensed professional such as a nurse, a parent, or a parent designee who has been trained in tracheostomy care.
• Your child’s school district can assist you in finding a classroom aide.
• Older children who know how to suction themselves and change their own tracheostomy tube do not need an aide in the classroom.

Quit smoking

Helpful Hint: It is never too late to quit smoking. Your primary care provider can provide various techniques to help you quit. Your primary care provider can also refer you to ENT clinic for tobacco cessation services.

• It is not safe your child to be exposed to cigarette or tobacco smoke. This is known as secondhand smoke. When your child has a tracheostomy there is direct connection to their windpipe.
• Exposure to smoke can lead to an infection and respiratory distress. Exposure to smoke is also a well-known cause of cancer.
• If a member of the household is not ready to quit smoking they should smoke outside the home. Prior to re-entering the home they should change their clothes because smoke attaches to the fibers in clothing.

Oxygen safety

• Your supply company will give you a card to put in the window of your home. This will inform others that oxygen is being used inside the home.
• Oxygen is a gas that can start fires or cause explosions.
• Do not smoke or allow anyone else to smoke anywhere near the oxygen equipment.
• Oxygen tanks should be kept at least 5 to 10 feet away from an open flame such as a gas stove, wood-burning stove, fireplace, or candle.

Prevention of infection

• Wash hands with soap and water or use hand sanitizer before handling the tracheostomy equipment or supplies.
• Routinely clean your home equipment per the guidelines from your supply company.
• A yearly flu vaccine is recommended for your child and anyone who lives in the household.
• Maintaining a clean household and routinely using disinfectant is recommended.
• Avoid exposure to secondhand smoke.

Speech with a tracheostomy

The goal is that all children with a tracheostomy tube should speak.

The speech pathologist will work with your child on:

1. Language comprehension (e.g. use of signals, turn taking, following directions, pointing),
2. Expressive language (e.g. gestures, sign language, and supplemental communication), and
3. Vocal and speech sound development to strengthen vocalizations, speech sounds and words.

This may involve finger occlusion or a speaking valve once your child is cleared by a trained healthcare provider to this activity.

Language

Language is the ability to understand words and the ability to use words to communicate. By ten months of age infants can separate speech sounds and participate in babbling. Children need to hear themselves speak and communicate with others in order to continue to develop their language skills.

Tracheostomy placement usually does not affect language skills unless there is another diagnosis that prohibits speech. For example, a diagnosis of vocal cord paralysis, deafness, developmental delay, or a genetic syndrome may affect speech.

Speech

Speech includes your voice and the way you pronounce sounds.

In order to produce sounds the vocal cords in your throat need to be functioning properly. When air passes through the vocal cords they vibrate and produce a sound. That sound is your voice.

The tracheostomy is placed below the vocal cords as a result air passes through the tracheostomy tube before it can reach the vocal cords.

To produce speech you and your child will be taught “finger occlusion”. Finger occlusion is the process of placing one finger over the opening of the tracheostomy tube. When the tube is open you will not be able to hear your child’s voice.

Speaking valves

Speaking valves are commonly used to help a child speak more normally. It is a small one-way valve that is placed on the tracheostomy tube.

There are different types of speaking valves with varying levels of resistance. Your child will have to breathe against (resistance) the valve in order to speak. It is harder to breathe with the valve in place compared to when the tracheostomy tube is open.

The ENT surgeon, nurse practitioner, or speech therapist will determine when your child is ready for a speaking valve.

Speaking valves can be used in-line with ventilator if approved by ENT.

It may take some time before your child is comfortable wearing the valve. They may only be able to wear it for a few minutes at a time initially. Your child may need to be distracted with a game or a movie while they learn to use the speaking valve.

Signs that your child should not use a speaking valve:

• Child is asleep
• Child is unconscious
• Excessive tracheostomy secretions
• Excessive drooling
• Aspiration risk
• Chronic cough

Eating with a tracheostomy tube

The speech pathologist will decide if your child is interested in eating (feeding aversion), has difficulty handling food in the mouth or throat, and if food is entering the airway (aspiration).

Often children with tracheostomies have limited positive oral experiences. We need to be able to get near your child’s mouth to be able to assess it.

Oral motor therapy for the mouth can be used to build a foundation for feeding. Depending on your child’s age, we will start with a pacifier or empty utensils and then tastes of food on your child’s fingers. We want to build positive experiences around feeding and swallowing for the best long term results.

Safe swallow

• If your child was able to eat safely by mouth prior to the tracheostomy, then it is likely that your child will continue to eat safely after surgery.
• If your child was not able to eat safely by mouth prior to surgery, then it is likely that your child will need a short-term or long-term feeding tube.
• All children will have a swallow evaluation at the bedside before being allowed to take liquids or solid foods by mouth. It may take some time to get used to the new sensation in their throat because of the tracheostomy tube.
• If it is decided that your child does not have a safe swallow he/she may need to have a diagnostic swallow study (DSS).
• For young children or children with developmental delays, an adult should always be present during mealtimes to supervise chewing and swallowing.
• Your child should never eat by mouth when connected to the ventilator.

Swallow evaluation

Helpful Hint: Always suction your child prior to meals. Secretions in the tracheostomy tube can cause excessive coughing and result in vomiting.

• A swallow evaluation will occur in the hospital once your child has recovered from surgery.
• The ENT nurse practitioner or speech pathologist will evaluate your child’s readiness to trial liquid, soft, and/or solid foods.

Signs that your child may need diagnostic swallow study:

• Upper windpipe noise, constantly sounding like there is mucous at the back of the throat
• Rattling noise in the chest
• Frequent respiratory infections
• Excessive drooling
• Difficulty swallowing
• Having the sensation of food getting stuck in your throat or chest or behind your breastbone
• Choking, coughing, or gagging while drinking or eating
• Food in the tracheostomy secretions
• Reflux