So, Your Child Is Going Home On A Ventilator

That’s a scary sentence to hear. How on Earth can you manage a life sustaining device at home… by yourself? When it comes to your kids, people can do AMAZING things, including this. In this article we will go over the basics, see what everything looks like, and get a little groundwork to get you ahead of the game.

Ventilators are like cars or cell phones, in that there are several different types & models. They all have differing features and options, with a myriad of accessories and add-ons that could enter the picture as well. Because of this, we could cover so much information that could go on and on and on until you would probably get tired of reading about all of them and bail out of this article pretty quickly. So, for the sake of simplicity, we’ll keep things really basic.

Let’s start off by discussing two categories or uses of ventilators, or vents for short. The first, and more common, is referred to as invasive. This simply means that the patient using the vent has a tracheostomy tube (trach), and the vent connects to the patient at that tube or opening. The patient generally receives all of the air that the vent provides through this opening. The second type is referred to as non-invasive. This means that the patient does not have a trach and the vent normally connects to the patent using some type of mask that fits over the nose, mouth, or both. While these types of patients aren’t quite as common, there are many people who fit in this category.

While we won’t cover all of the vents here, we will use a particular type of vent to serve as our example. The Respironics Trilogy is a common home vent that is in use in most areas. We’ll use it in our illustrations and examples.

The vent has to have several things in order to do its job. Let’s look at what you need in order for the vent to be used effectively for a patient.

The first item is called a circuit. This is simply the tubing that is used to connect the vent to the patient. It’s made specifically for the type of vent in use and there are several items that may be used with the circuit, though not every patient will use every item. There are adaptors that ensure that the circuit fits securely to the patient’s trach (or mask if it’s a non-invasive patient). Some circuits are what are referred to as “heated wire circuits”, which means that there is a very small wire that extends from one end of the circuit to the other, on the inside of the circuit. This wire is heated to help keep the air warm as it travels from the vent to the patient. Some circuits do not have this feature. Most vent circuits are disposable and need to be changed regularly, usually each week or so. It is very important to keep the circuits as clean as possible. This prevents any foreign objects or contaminants from getting into the patient’s airway.

Trilogy Circuit

If a patient is using an invasive vent (remember, this means that they have a trach) they most likely will require a piece of equipment to warm and humidify the air. This is because, since the patient has a trach tube, they do not breathe through their nose. The nose it what naturally adds warmth and moisture to the air we breathe. Since the nose is bypassed with the vent patient, we must add warmth & moisture to the air that comes from the vent. So, the air is ran through a vent heater to do this.

Vent Heater

A short piece of the cent circuit (tubing) connects the vent to the vent heater. The air passes through a small chamber that has warm water in it.

Water/Hum Chamber

This allows the air to be heated and humidified. Then the longer piece of tubing connects from the vent heater to the patient’s trach tube. The vent heater normally is mounted under or very near the vent so that it may be used right along with the vent as long as the patient needs it.

Connected and on the stand

When the patient travels with the vent, and very many of them do, they will not use the vent heater during their travels. Using a vent heater at home is preferred, but when travelling, using a vent heater is not practical and could even be dangerous. This is due the high risk of getting water into the vent circuit, and into their trach, which leads to the airways and lungs. Because of this, patients use what called a “heat moisture exchange” or HME. These small devices fit directly into the vent circuit. The HME traps and holds on to small amounts of heat and moisture from the patient’s own breathing and uses it to add the warmth and moisture that the patient needs in their air. HME’s come in various shapes and sizes, but they all do the same thing. The patient’s respiratory therapist or doctor will best determine which is the proper one for them to use.

One of the MANY types of HME’s

Most home ventilators have batteries to help the patient be as mobile as possible. There are several types, so we’ll simplify things be dividing them into two categories. Internal and external. An internal battery is, well, internal…its inside the ventilator and you can’t see it, but it’s there. These are usually changed whenever your vent has periodic routine maintenance performed.  An external battery is outside the vent and usually is either connected to the vent directly or by a wire or connector. Some batteries are designed to be light and portable, notable the lithium-ion types. However, the old fashioned deep cycle marine batteries are still in use by some patients. These are much heavier and are generally used in the home in the event of a loss of electrical power.

External (Detachable) Battery

Batteries vary in the amount of time they can last. Internal batteries normally last anywhere from one to three hours. External batteries typically last around two to three hours, although these times can vary depending on the age and use of the battery. Some batteries will hold a charge for shorter time as they get older until they can no longer provide enough power to be useful. Other batteries have a limited number of times that they can be used. This is commonly referred to as “cycles”. If you use your vent’s battery for a certain amount of its time limit, then you have used one cycle. When the battery reaches that limit of cycles that are used, then the battery is no longer useful and won’t power the vent anymore. It is very important to only use the battery designed for your vent. Your DME (Durable Medical Equipment) provider will instruct you in the do’s and don’ts of using a battery with the vent. Always follow their instructions and if you aren’t sure about something, always ask in for help and guidance.

Most home vents have a carrying case or travel bag that’s used when the vent patient travels outside the home. Some of these can be used with a wheelchair or a stroller. Most of them are not designed for a specific type of chair, so most have straps or grommets that clips or carabiners can be attached to so as to secure the vent. When the vent patient travels, there are multiple things to plan for (see traveling with the vent). Make sure that when you are preparing to use your travel case, you inspect it for any rips, tears, holes, or weak areas that might cause problems during the outing.

Trilogy in the In-Use Bag

When the vent is in use at home, the majority of the time its positioned on a stand that is made the vent. The vent’s heater is usually also positioned on the stand. Some stands also have a hook or arm that can hold the bag of sterile water that is used in the vent heater. If you stand doesn’t have one, try to avoid placing the bag of water directly on top of the vent to reduce the risk of accidently getting water in or inside the vent. Some stands have small baskets that are really handy for storing items that are normally used during the day, such as suction catheters or nebulizer supplies. If your vent stand has any issues, including problems with the wheels or brackets be sure to inform your DME provider so that it can be repaired or replaced. A faulty vent stand can cause problems, both big and small. Don’t let a small problem with the vent stand cause a bigger one with the vent or vent heater.

Because your vent uses air from the room its being used in, it is necessary to have filters on the vent. Some vents have one filters, others may have more than one. It is very important to keep these filters clean and in proper working condition. Remove the filter and clean it at regular intervals, usually it is a good idea to check them every time you change the circuit. Clean them thoroughly according to the manufacturer’s instructions and be sure that they are completely dry prior to placing them back in the vent. Most vent patients have two filters that they exchange back and forth, washing one and placing the other in the vent. When the filter is ready to be cleaned, the caregiver can take the other filter and place it in the vent, then they can take the other filter that was in the vent and clean it properly. Then the filter can be stored so that it can properly dry. Then when its time for another filter change, just repeat the process. Be sure to inspect the filter each time its cleaned. If the filter material looks like its starting to deteriorate or break down, contact your provider for a replacement. This small step will go a long way in keeping the air clean for the patient.

Filter is the black rectangle on the bottom right

If you use a nebulizer for in-line breathing treatment, make sure that you have the correct adaptors to do this. If a metered dose inhaler (MDI) is used, there is a correct adaptor for these too. Take care to use these only for a limited time, usually not more than a few weeks at a time, as the ports can, over time, get a bit clogged from old residue from the inhaler.

Neb T on the left, MDI spacer on the right

There are several types of swivel adaptors that connects the vent at the trach. If you use one that has a port that opens for a suction catheter, make sure that it closes properly after suctioning and that it stays closed securely. If it won’t stay closed, it will cause a leak, potentially a significant one, and should be replaced.

Suction port is the light blue area on top

Some vent circuits use whats called a “whisper swivel” that is placed in-line or as a part of the circuit.  Take care to see that its not clogged up or otherwise obstructed. Bed linen, pillows, clothing, or any type of item that may obstruct the swivel should be moved away from it. The whisper swivel allows that patient to properly exhale and if it is obstructed or occluded it could prevent the patient from properly exhaling which could cause problems quickly, and could result in harm to the patient.

Whisper Swivel

Another important piece of the vent setup is called a bacteria filter. This goes between the ventilator and the circuit and traps any bacteria or viral particles so they don’t recirculate.

Bacteria Filter

Finally, let’s look at the vent settings. Every vent patient is different. This means that every vent patient will have certain settings that are programmed into the vent. These setting are tailored exclusively for the patient by the doctor and the respiratory therapist. They should never be changed or altered. You should never attempt to make any changes in any of the alarms or settings. This may result in discomfort or harm to the patient. If you have questions or concerns regarding any vent setting you should contact the doctor or respiratory therapist as soon as possible.

The relationship with the vent patient, their family, the DME provider, and the patient’s doctor is a very important factor in assuring that the home vent patient is taken care of properly and safely. Its vital to keep an open line of communication with the doctors and providers so as to keep everyone informed of any changes or needs of the patient. Communication to and from the patient caregivers is a key link to the successful care of the home vent patient. Don’t hesitate to communicate any needs, concerns, problems or emergencies. Also, be sure to keep the lines of communication open so that you can receive information too.

Being on a ventilator at home can seem like an intimidating thing, and it can be at times. But with the proper training and education, most families can venture into this strange new world and become excellent caregivers. This results in their loved one enjoying the benefit of receiving high quality care at home. And while the hospital is a good place to be when you need it, if you have the option, home is always better.

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