ALS From Both Sides, Care of an ALS Patient By Diane Huberty, Retired RN, Certified Neuro Nurse and ALS Patient

Trach Care: The Rest of the Story

In the process of making the decision of whether to have a tracheostomy tube placed you may hear myths about how complicated trach care is, how time-consuming, expensive, ugly, and problem prone trachs are. Worse, you may be told you will never be able to speak or eat again. Your doctor will focus on what a trach tube will do to help you and what the surgery will be like. After surgery, your nurses will teach you and your caregivers how to care for a trach. (Well, sort of. You get postoperative trach care.) This article is intended to tell the rest of the trach story by correcting misconceptions and filling in some of the blanks about actually living with a trach.

Trach Care

In the hospital trach care is performed and taught with a ritualistic precision rivaling a Japanese Tea Ceremony! Eventually, some nurse will let the cat out of the bag and mention that home care procedures aren't as strict. So what is safe and reasonable for home care? Once the trach incision is healed and no blood or blood tinged drainage is seen, here are some guidelines for care:

  1. Cleaning Around the Trach
    1. This part of trach care is done in 30 seconds as part of bathing or washing up. Once a day cleaning is enough unless you have a lot of mucus drainage around the tube or recurring infections. Gloves are optional for washing the area but good hand washing first is not.
    2. For decades 3% hydrogen peroxide was the standard solution used for wound care. Today we know that peroxide damages the fibroblast cells that provide the scaffolding for wound healing, actually slowing healing and leading to the growth of granulation tissue (discussed later). It has also been found to have minimal antibacterial effect. Peroxide is very good for removing dried blood, drainage, and mucus, but once the tracheal incision stops bleeding it is time to move on to a different wound cleaner.
    3. Finding a safe, easy to use, and inexpensive cleaner for long term use is easy: Buy some ordinary hand soap. Soap has as much antibacterial action as peroxide and none of the cons. A soap labeled as antibiotic is not necessary, in fact, these soaps kill only some bacteria and may allow other bacteria to take over. Additionally, this overuse of antibacterials is of concern to medical people and environmentalists. Finding a soap without antibacterials, lotions, or perfumes is not critical for trach care and is increasingly difficult, but they are available. You may be able to find Ivory or Jergens without antibacterials or check natural health stores for other brands.
    4. What about the sterile water, 2x2's, Q-tips, and ointments and gloves sent home with you? By the time the first batch of these supplies is used up, the edges of the wound should be well healed and plain soap and water can be used. The 2x2's and Q-tips can be replaced with clean washcloths. Buy a big economy pack of cheap, thin washcloths. Plush washcloths are too thick to get in close around the trach.
    5. The best thing for the skin around the trach is exposure to air by skipping any ointment and, if a 4x4 is used, keeping it dry. Most people continue to use the split 4x4s around the trach to absorb any drainage, reduce air leakage and to hide the skin opening (stoma). Unless an infection develops, an antibacterial ointment isn't needed. If the area seems damp all the time, an ointment containing zinc oxide provides a good moisture barrier. An itchy, burning trach site may have "athlete’s foot" from being warm and damp. A couple days use of a non-prescription anti-fungal cream, combined with twice a day washing and keeping the area dry will clear it up quickly.
  2. Inner Cannula?
    A trach tube with an inner cannula is actually a tube within a tube. The smaller inner cannula is removed for cleaning daily. Some trachs come with disposable inner cannulas which make trach care fast and easy but expensive. The need for an inner cannula varies and not all people with trachs have one. See Trach Choices
    1. Cleaning an Inner Cannula
      1. Because the inner cannula is inside the body and warm and moist, this isn't a good place to cut corners on cleaning. Continue with the sterile procedure as taught. Or ask your doctor if you can be switched to a trach without an inner cannula. That is a big time saver!
      2. Trach cleaning kits are handy and include a brush that fits inside the inner cannula, but to save money the brushes and containers can be washed and reused. The trick here is thorough drying after washing any equipment to be reused. Putting them away damp provides an excellent opportunity for bacterial and fungal growth.
  3. Trach Ties
    1. Daily changing isn't needed. The most economical trach tie is a roll of twill tape. More expensive types of trach ties have the great advantage of allowing easy adjustments to the tightness of the ties because they use a Velcro closure. These ties can be washed and reused many, many times before the Velcro loses its grip.


The first question asked about suctioning is "Does it hurt?" No. The coughing it causes may look downright lethal to observers but doesn't hurt. In fact, suctioning almost feels good because it gets rid of the congestion so easily. A half minute back on the vent to catch your breath and all is well. A caregiver may ram the suction catheter (tubing) in too far and that does hurt, but doing it correctly (inserting the catheter just until a cough is triggered, not until you hit bottom) should not be painful or even particularly uncomfortable.

For the person suctioning, the difficulty is not in the actual suctioning. That is simply a quick vacuuming. The challenge is in getting a glove on, the catheter out of the package and connected to the tubing, the machine on, and the trach hose off—all without allowing the catheter and gloved hand to touch anything but each other! It seems like learning to juggle at first but quickly becomes as automatic as tying shoe laces. Anyone—friends, neighbors, kids—can taught how to suction with a simple explanation as they watch it done and the opportunity to practice.

Suctioning rarely takes longer than 3 minutes for set up, suctioning and clean up, but sometimes several passes with the catheter and time to catch your breath in between are needed. How often suctioning is needed varies widely. Some patients are suctioned only two or three times a day, others a dozen or more. Every one has good and bad days too.

Just as with trach care, home suctioning is simplified. I don't "recommend" my way of suctioning but as time goes by, cutting some corners to save time and money can work for stable patients who don't have multiple caregivers or caregivers who have other trached patients. Nurses may want to brace themselves as I describe the way we do suctioning. It is NOT the way you were taught! Safe? It has worked for me for 15 infection free years! I use standard catheters not the closed (inline) type that remains attached to the trach tube. Someone prone to respiratory infections or with many caregivers will want to be more strict or use the closed sytem type. We do suctioning with a standard catheter and just one non-sterile disposable exam glove (not reused). The full sterile method used in the hospital requires a bottle of sterile water and a sterile suction kit containing a suction catheter, a pair of gloves and a small sterile container for the sterile water. At home, this can be simplified unless you have a parade of different caregivers. My routine has been pretty much whittled down to the bare minimum but still adheres to the basics: "Don't touch the business end of the catheter with your bare hands." And "There is no five-second rule if you drop it!" The steps are:

  1. Loosen the trach hose so you won't be fumbling one handed to pry it off.
  2. Open the package or baggie containing the suction catheter.
  3. Put on one exam glove (not sterile but from the manufacturer's box). Pick the glove up by the cuff with one hand and pull it on the other hand using the cuff to tug it up. The idea is to get it on without touching anything but the cuff with your other hand. You now have one clean hand and one which you will now consider absolutely filthy with germs. (It is!)
  4. With the gloved hand, take the suction catheter out by the suction tip, not the connection end, winding it around your gloved hand.
  5. With the ungloved hand, silence the vent alarm and disconnect the trach hose from the trach tube.
  6. With your ungloved hand, attach the suction catheter to the suction machine hose.
  7. Suction.

Oh, and caregivers, don't try the "I will hold my breath to determine how long my patient can be off the ventilator" trick. You will take a deep breath first. Your patient can't. He or she can't hold a breath-- it escapes out of the trach. On top of that, you are about to suck any remaining air out of their lungs! Tolerance for suctioning varies so just watch for any sign that your patient is feeling suffocated and put them back on the vent for at least a few breaths before suctioning again.

  1. A new catheter is used daily. Insurance usually limits the number of catheters used per day. Medicare allows 3. In between uses, the catheter can be put back in the package, but we find that zip lock baggies (changed daily) work better for catheters that come coiled in the package. The suction catheter itself doesn't need rinsing between uses, but if you want to, suction sterile water from a sterile container through it. Suction kits with pop up sterile containers are available for this. We put the baggie in the refrigerator with the idea that the cool temperature will slow any bacterial growth. I don't know if that actually works, but without a designated place to put it, we would probably go through our allotted 3 per day every day just because we couldn't find the open one!
  2. The suction machine tubing can be rinsed through by suctioning up fresh tap water (through the suction machine hose, not the suction catheter) from a clean glass. My husband and I don't like seeing a suction canister with "stuff" in it, so instead, he removes the suction machine hose and runs water through it after one or two suctionings. (Under the bathroom faucet, cold water, and stretched to drain into the toilet, not down the sink drain. Yuck!) This way the "stuff" never reaches the canister. We don't bother with this at night though. The canister gets rinsed out in the morning.

Trach Changes

The first trach change is generally done before you leave the hospital. After that it may be done in the hospital's out patient clinic, doctors office, or by Home Health. A common question is how often a trach needs to be changed. Like everything else with ALS, doctors, respiratory therapists, hospital nurses, and home care nurses have different answers -- and patients have different needs. I have never found an answer to that in an official Medical Standard of Care, but Medicare covers a new trach every 3 months. I have mine changed if I have problems with it which is almost never. I try to remember to have it changed once a year!

When you call for a trach change appointment tell them the brand, type, and size trach you have (i.e. Shiley, cuffed, size 7) so it can be ordered if necessary. We order my trachs through our vent supplier, and they are delivered to our home. That way we always have the right trach on hand for a home emergency. (In 15 years we have never had to replace my trach at home.) It is a very simple procedure that anyone can do and unless there are problems with an abnormally shaped trachea or granulation tissue (discussed below) most trach changes can be done at home by caregivers who have seen it done several times. Caregivers should at least assist with a trach change to be prepared for an emergency.

Coughing is perfectly normal for several minutes after a trach change. The trachea is made to react with strong coughing any time it is messed with. I always thank the RT changing my trach before the change because I know I will be coughing too much to say it after!

If you have bleeding with trach changes, it can be due to granulation tissue. If the bleeding is from the skin opening, try a bit of hydrocortisone cream around the trach once daily for about three days before the trach change. That will shrink the granulation tissue and reduce the bleeding. If the trach change causes deeper bleeding that results in blood in the mucus suctioned after changing the trach, that may indicate granulation tissue down in the trachea. This necessitates more frequent trach changes, not less, to prevent the tissue from building up and making changes more difficult. A consultation with an ENT doctor should be done.

Frequency of changes varies from weekly to monthly, to every other month, to "whenever it seems to need it." People prone to granulation tissue will have easier changes if they are done frequently and frequent changes may reduce respiratory infections, especially in people with sinus problems.

Trach Choices

Once your trach tube is put in you may think that it can't be made better. You don’t have to continue with an off the rack, standard issue tube, however. Options include:

  1. Specially sized trachs for people with very long or short necks are available as well as custom fitted trachs for anyone whose trachea is abnormally curved.
  2. With or without an inner cannula.
    1. The purpose of the inner cannula is to prevent restriction of airflow through the trach as mucus sticks to it and builds up. It provides a fast way to remove complete blockage by simply removing the blocked inner cannula and sliding in a new one. Newer trach tubes, such as Bivona trachs, have a silicone lining that prevents mucus from sticking to the tube and building up eliminating the need for the inner cannula. However, someone with frequent large mucus plugs that are not easily removed by suctioning would need the inner cannula so that it could be replaced quickly if plugged up—if the plug is actually in the cannula and not just below it or down in the bronchi. Using a trach with an inner cannula after a tracheostomy when there are thick secretions or even blood from the surgery allows time to evaluate whether the patient needs the inner cannula, so a trach with an inner cannula may be put in when the tracheostomy is done, but can be replaced with a trach without an inner cannula with any routine trach change. A trach tube without an inner cannula is a simple, no fuss trach that eliminates cannula cleaning.
  3. A TTS (tight to shaft) trach is an option that is especially helpful for those who have difficult trach changes. A TTS cuff flattens tightly to the shaft of the trach tube when it is deflated, making tube changes easier and more comfortable.
  4. Cuffed or uncuffed trach.
    1. A cuff allows better control of the volumes of air given by the vent. With the cuff inflated, the full volume of air is delivered to the lungs. Deflated, a significant portion of the air escapes through the nose, mouth, or around the trach tube at the stoma. Patients who don't have a lung disease such as emphysema or COPD generally have no problem with a deflated cuff or cuffless trach.
    2. An uncuffed requires a stable respiratory status. I find I need a cuffed trach. Even though I have the cuff deflated during the day so I can talk, I need it inflated for sleep, or I snore horrendously!
    3. Contrary to common belief, a cuff does not provide full protection from food, fluids, or saliva getting into the lungs. Anything that "goes down wrong" when swallowing will simply sit on top of the inflated cuff and wait until the cuff is deflated to continue its journey to the lungs. Closing the cuff when eating can actually worsen the ability to swallow safely because it reduces the movement of the valve that closes over the airway during swallowing.
  5. Another, newer trach option is a trach which has two suction ports, one to suction the lungs and another much smaller one that allows suctioning of the area just above the cuff. This allows above the cuff suctioning right before deflating the cuff to remove fluids waiting to drop into the lungs. The downside is that this second suction tubing is part of the trach itself and is so narrow that it is easily clogged making unusable until the next trach change.
  6. Fenestrated trachs have a hole or holes along the tube to allow some air to escape and travel the normal route up and through the vocal cords. This allows the person to speak. Fenestrated trachs can encourage the growth of granulation tissue around the holes and cause bleeding with trach changes. Other methods of providing air for talking are recommended.

Speaking with a Trach

For people who were able to talk before being trached there are some options for resuming speech.

  1. The first thing to try is simply deflating the cuff so that some air can pass over the vocal cords. If you can talk with the cuff open, you will find that adding about 5 of PEEP (Positive End Expiratory Pressure) to your ventilator by adding a PEEP valve to the tubing will give you the reserve air volume to speak more smoothly rather than saying one or two words with each breath. For some reason, adding to the PEEP settings on the vent itself doesn't seem to work. An external PEEP valve inline on the hose does. The volume delivered per breath will probably have to be increased to make up for air lost around the deflated cuff. For example, my volume is set at 700 and with the cuff deflated about half that goes up through my vocal cords rather than into my lungs. The remaining 350 cc's is plenty for comfortable breathing.
  2. Another option is a speech valve such as a Passey Muir that directs exhaled air through the vocal cords. These valves also require that the cuff be deflated during use so may need volume setting changes. A speech therapist will show you how to use it.
  3. There are also "talking trachs" that use compressed air, rather than air from the lungs, to pass over the vocal cords. Because they require an external source of air they are less convenient, but for anyone whose breathing can't tolerate any air loss from the lungs, these are an option.

Eating and Drinking

As with talking, if you could swallow safely before the trach you should be able to after. Although a cuffed trach can provide some protection from food and liquids getting into your lungs, it isn't complete protection. Anything that "goes down wrong" when swallowing will simply sit on top of the inflated cuff and wait until the cuff is deflated to continue its journey to the lungs. Closing the cuff when eating can actually worsen the ability to swallow safely because it reduces the movement of the valve that closes over the airway during swallowing.

Your sense of taste and smell may be diminished somewhat when you have a trach because the air isn't passing through the nose, but not necessarily lost. With my trach cuff deflated, my sense of taste is, unfortunately for my waistline, unimpaired. My sense of smell is limited only in that I cannot sniff well enough to smell something being waved under my nose. A scent that permeates the air such as food cooking, a vase of flowers, or something going bad in the fridge is very obvious to me! With the cuff inflated, my sense of smell is quite diminished but not erased, and my sense of taste is just fine.


One of the most often asked questions is "Can I take a tub bath or shower with a trach?" The answer depends on the individual. The last thing anyone needs is to get soapy water in their lungs!

  1. If bathroom space allows, you can position the vent alongside the tub or shower and protect the vent from splashes with a plastic drape or bath towel.
  2. If you can tolerate having the trach cuff deflated and the trach plugged while you wash, there should be no problem.
  3. If you can be off the ventilator but can't plug the trach, a shower is out and bathing requires caution. Bathing using a tub or shower sling prevents the risk of slipping under the water but the trach still needs to be protected from sprayed or splashed water.
  4. Soaking in a tub or shower feels good but certainly isn't necessary for keeping clean. Being moved to a shower or tub chair, then back again is a lot of work for your caregiver and tiring, uncomfortable, and chilly for you. A "sponge bath" is faster and easier on you both. But don't use a sponge. Use a washcloth and scrub, don't just wash. A delicate touch won't remove flaky old skin, but some areas may be too sensitive for scrubbing!

Unexpected Aggravations

Many of the day to day aggravations of life with a trach are never mentioned by medical personnel. They don't tell you that you may have a rafter rattling snore if you fall asleep with the cuff deflated. They don't mention that your ability to smell won't work quite as well when you no longer breathe through your nose. Worse, you can't sniffle or blow when you have a cold! Other aggravations include:

  1. Air Leak
    Perhaps the most annoying non-medical problem of a trach is air leaking around the trach and out the stoma. If you are on a vent the air loss can be enough to set off the alarms but generally, it just causes noisy whistles, gurgles, or whooshes of air with each breath. Of course inflating the cuff will solve the problem but it will also prevent talking. The best solution for an air leak that is driving you nuts may be to increase the size of your trach with your next trach change, but here are some things to try first:
    1. Sometimes just re-adjusting the trach so it is centered helps.
    2. Although tightening the trach ties seems like it should help, loosening them is actually the thing to do. Loosening the ties lets the trach tube sit at a slight downward angle which blocks the airway a bit more. Tightening the ties may help if they were loose to start with, but too tight ties, especially narrow ones, will lead to pressure sores under the ties.
    3. After a lot of trial and error (more gauze pads, fewer gauze pads, cutting the pad to open the slit to a trach sized hole in the middle, and stuffing Kleenex into leaky spots) I finally found a method that has greatly reduced my air leaks. Put one gauze pad (drain sponge) around the trach with the split pointing down. Place the second one on top of that with the slit pointing up. Then fold the top edges over and tuck the outer corners under the collar and trach plate. This also gives a neater appearance—no gauze flapping around or tickling your chin. trach dressing
    4. I find that I have trach leaks when the vent hose is allowed to hang to one side, pulling the trach a bit off center. There are lots of ways to rig up a little support for the hose. Duct tape, rubber bands, PVC pipe, and safety pins have all been put to use by trached vent users! I spend most of my day at my computer, so I have a spring arm on one side to loop the hose over. A flexible arm desk lamp with the lamp and wiring removed is an inexpensive version of a spring tension arm.
  2. Discomfort from hoses
    The stiff plastic of vent hoses makes it hard to position the tubing so that it is not pushing or pulling at the trach. To reduce this you can get a short length of a more flexible rubber hose to put between the trach and the vent hose. This rubbery hose is used in the set up for nebulizer treatments so should be available from your respiratory supplier. This softer hose is more comfortable, but acts as an echo chamber for any rattly congestion!
  3. Coughing
    Another aggravation is that whenever the trach or vent tubing is moved it sets off a coughing spell. You quickly get past the fear that it causes and recognize that it is just an aggravation and not a problem. There isn't anything to prevent this, but simply disconnecting from the hose when transferring or being turned in bed really helps. Most people tolerate a minute off the vent with no trouble.
  4. Granulation Tissue
    Granulation tissue is an overgrowth of tissue as the body attempts to close a wound. It can grow out around the trach opening, looking lumpy, bumpy and red, purple or pink because it is full of blood vessels. It leaks serosanguineous fluid making the area moist and a haven for bacteria. It can bleed easily, can become infected, and may be sensitive and uncomfortable. It can get in the way and make trach changes difficult and may even develop down in the trachea causing bigger problems.
    Not everyone seems to be susceptible to developing granulation tissue and it is unclear what triggers it. There is some evidence that continued use of hydrogen peroxide for cleaning causes it, and the logical suspicion that frequent trauma to the trach site and the trachea itself from pulling on the trach and tubing will stimulate it. Since the cause is unclear, suggestions for prevention are limited to not using peroxide and stabilizing the trach tube as much as possible.
    If granulation tissue appears at the trach site, applying cortisone cream is usually effective in shrinking it, or silver nitrate can be used by your doctor to chemically burn it away. Another possible home remedy is a cream containing zinc oxide. Keeping the area clean and dry is especially important if it the granulation is leaking fluid. Granulation tissue down in the trachea can usually be removed with laser surgery.

One Last Tip

You will be surprised to find that most all of your shirts and tops won't interfere with your trach so you can continue to be the snappy dresser you were! Don't give away your turtlenecks! Although you probably won't be able to wear your knit sweater turtlenecks, it is a quick fix to cut a small hole for the trach in the collar of a cotton turtleneck or dickie. The turtleneck hides most of the trach ties and makes for a much neater appearance.

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