Goodness, I don’t even know where to start… But maybe at the time when after the birth of Vince we were told in the hospital that once a week we would need to go to the Department of Otorhinolaryngology where they would change the tracheostomy tube holder, and once a month this would be combined with the tracheostomy tube change as well. After three days at home, the holder stank from the formula-breast milk mixture that didn’t make it into Vince’s mouth. At the beginning we waited out the one week, packed Vince up with all his belongings, went to the hospital, but then I gave up. My hands were shaking as I threaded the new band through the tiny hooks of the tracheostomy tube, I tied it, and after I gave it a tug and I was certain I did a good job, I cut the ends. I still shudder when I remember how much fear filled the room, and how exhausted I got from all this nervousness by the end of the day. Then as time passed by, I was getting more and more confident about the changing of the band. I thought I was on top of the world when I suddenly got into a real-life situation and I had to change the tracheostomy tube on my own. I don’t think these experiences can be ever be completely processed, so I must write down again that I keep shivering as I think back on these events. The important thing is that now I am at a point where I change the tracheostomy tube once a week and the band once a day if Vince is healthy.
I made a video about how I change the tracheostomy tube, you can take a look here:
It is important for you to know that if your child has a tracheostomy tube, you must learn this, or if you are not the one who is with him/her at all times, the person who is able to do it!
For the replacement you need the following tools: a small pair of scissors, the band, Lidocaine gel, disinfectant cream, gauze, a small brush to clean the tracheostomy tube if you don’t have a spare one, a small pillow to prop up the head or any piece of clothing that will help you access the tracheostomy tube more easily.
I start every replacement with a prayer, then I prop up Vince’s neck and cut the band. At the beginning I always did this with a story going in the background, so I would get him distracted, but by now he has become a pro and knows exactly what’s happening. I always dip the new tracheostomy tube into Lidocaine gel, and I slowly slide it into the opening (stoma). The gel helps it to become more slippery. If he coughs or is ready to cry, or I see any other emotional change, I don’t pull the tube out until he calms down. Unfortunately once I did it while he was crying (I tried to be done with it as soon as possible), but at times like these the stoma on his neck can contract, and it is rather difficult to put the tube in. So it is worth waiting for everybody to calm down. The stoma doesn’t close up so fast, some people say it takes as long as 20 minutes, but I have never tested this theory. I know a little girl whose stoma didn’t close up for years after her trach was removed. She ended up needing surgery for that. We are not the same of course, I only write this down so people who change a tracheostomy tube know that they don’t have to hurry up, it will go much easier with slow and leisurely movement. When removing the tube, the place of opening is perfectly visible, and if the skin is red there, that needs to be treated right after the replacement of the trach. Many people use some sort of cream, but that didn’t work for us. Clean water is best. They use saline solution at the hospital, and I got used to using a thermal water spray I can get at the pharmacy, which is very easy to handle. If the opening is not red, I don’t even use the thermal water anymore, because during the daily baths I wet my hand and I wipe below, above and around the tracheostomy tube. If the cleaning is done, I tie the band. It is important to be able to put one finger between his neck and the band, because it is not good if it’s tied too tight. I see that people use a foam-padded tracheostomy tube holder with Velcro at the ends, which is very practical when changing the tube. The Velcro opens easily, and there is no need for scissors, but Vince tends to sweat a lot, so he couldn’t handle the thick foam around his neck. After I have tied the band with 3-4 ties, I am ready with the replacement. I give thanks to God that everything went well, and we go on with our day. I put the removed tracheostomy tube into disinfectant for a few hours, and after it’s dried, I can reuse it. When Vince is sick, depending on the amount of secretion, I change the tube every 2-3 days. But it’s happened before that we were over at a friend’s house where there were a lot of kids with a cough. As soon as we got home, I replaced the tracheostomy tube to prevent any kind of infection.
The suctioning of the secretion coming from the trach is an important part of the cleaning. The suction catheter shouldn’t be pressed further down than the length of the tracheostomy tube, which is about 1.2-1.6 inches. Of course if the secretion is thick or it is a larger amount, it’s okay to push it further down a little, because it comes out easier. Naturally it’s not necessary to go down that far at the every-day suctioning, because the wall of the larynx can get damaged.
When we do the suctioning, it is important to keep spinning the catheter (holding it with the thumb and the index finger), so in case we press it a little further down, the wall of the larynx won’t stick to the end of the suctioning tube due to the vacuum created. This is what causes most of the damage on the wall of the larynx, which could cause further difficulties later at the decannulation (the process when the tracheostomy tube is removed to try to get the child to breathe normally, through his/her nose and mouth).
Until the age of 3 and a half I suctioned Vince’s tracheostomy tube every two minutes, especially when it was feeding time, because for digestion body produces extra saliva. However, the speaking valve comes to the rescue here as well. It has such a blessed side effect, that beside giving the ability to speak, the secretion doesn’t need to be suctioned, or only very rarely, because it goes into the mouth with the air beside the tracheostomy tube. If someone has the ability to swallow, then he/she simply swallows it to the stomach through the pharynx. The secretion (that normally gathers in our mouth) cannot get to the mouth in the case of children with a tracheostomy tube, but it needs to be suctioned out from the tube, if the child is not able to cough it up. Unfortunately Vince cannot do this, so until we didn’t know about the existence of the speaking valve I used to suction the secretion out from his tube about every two minutes during the day. When he is sick, he cannot tolerate the speaking valve, and sadly this hasn’t changed to this day. During an illness a larger amount of secretion can get stuck on the wall of the larynx that didn’t get suctioned (due to a larger amount being produced), so at times like this I change the tracheostomy tube more frequently.
However, if I don’t have the option to change it, but I see that there is secretion stuck to the opening of the trach, I just take a cleaning brush (especially designed for tracheostomy tubes), I carefully insert it into the opening, and I scrape off the secretion. I only do this at the opening of the tracheostomy tube, and only very careful, so I won’t push a larger amount of secretion back into the tube and block it off. If the secretion is so thick it cannot be suctioned out, then saline comes handy. The gentler version is when I have Vince inhale it for a while, then I do the suctioning. But if I need to do it fast due to a larger plug, I drop 3-4 drops of saline, wait a little to dissolve the secretion, then I do the suctioning. This has to be done very carefully, because I have been in a situation before where I dripped the saline, and it dissolved the secretion very quickly. Unfortunately I pushed the suction catheter too far down to get the plug, but that wasn’t all that big anymore, and I damaged the larynx and it ended up bleeding. To this day I cannot forget how it shocked me to see that I was suctioning blood from the tracheostomy tube. Since then I have used this technique very rarely and very carefully. If I drop in some saline, I allow Vince to slurp for a while, then later I suction the secretion despite him giving out this slurping-gurgling sound.
By the way, it took quite a long time for me to learn when to suction and when not. If we suction too often and there isn’t enough secretion there, it is easy to damage the wall of the larynx. When we didn’t use the speaking valve it was very strange to me that Vince was giving out a slurping sound, and I was always afraid he wasn’t getting enough oxygen. But our experiences in the hospital proved that it was not the case. When I was ready to suction because the slurping sound was so bothersome to me, the hospital monitors were still showing for a good while that his oxygen level was perfectly fine. The problem wasn’t with the sound or the amount of the secretion, but with its quality. Because if it’s not clear, but rather sticky, coagulated, maybe even yellow from bacterial infection, that needs to be suctioned more often, because it can block the airway. Or, if the infected secretion sticks to the wall of the lungs, then the oxygen absorption is more difficult. This is why, during sickness, it’s very important to inhale several times a day, vibrate the chest, use the cough machine and suction the secretion.