I have often imagined that our morning starts with my son jumping into our bed and saying: “Surprise! Who will come and play with me?” We are actually very ungrateful, because we desire what we don’t have in that given moment. I haven’t been entertaining this thought for a long time now, but I am thankful when I hear Vince’s snuffle, which signals ‘come Mom, turn me on my other side.’ Our days begin like this, me going to over to him several times a night, turning him, and when needed, suctioning the secretion from his tracheostomy tube. I am often so dazed, one of my eyes doesn’t even open, I suction from the trach with one eye open, and I slip back under the covers right after.
Then the morning routine starts with me putting a mask on the tracheostomy tube and I have Vince inhale salty water for ten minutes. Then I put a pump on the trach and I use an inhalation spray (Flutide), which helps the oxygen get absorbed better in the lungs. If he is sick, first I spray with a bronchodilator (Ventoline), which helps dilate the bronchi. After that I suction the secretion and change the speaking valve. From that point on Vince can give out sounds. Of course his first word is always “Dad,” then come the rest of the flourishes in baby language. Now you may ask: how do we communicate? It is simple: from looks and nods to my yes-no questions. But I will talk about communication more in detail under Speech.
After I get Vince dressed and take him out to his potty-chair, I put him on his chair/wheelchair. I tie him in, so he won’t fall over, then breakfast can come. 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 the body produces extra saliva. However, the speaking comes to the rescue here as well. It has such a blessed side effect, that beside giving him 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. Then I joined an American Facebook group (it is called Moms of Trach Babies if you would like to check it out), where everyone’s child lives with a tracheostomy tube. This is where I first read about the speaking valve, and the first ones we ordered from the US when Vince was 3 and a half years old. By now I have researched a Hungarian company that distributes medical devices who helps us get it with the support of the Hungarian National Insurance Fund (OEP). We receive half a year’s worth of supply in one shot.
Breakfast by now has become very easy going, because if Vince is not sick, I don’t need to suction during eating, because he can manage with the speaking valve. All meals have to be pureed for a child with a tracheostomy tube, but of course there are a few exceptions I have seen examples for on the Internet. But for Vince I puree everything. From breaded meat through fresh salad all the way to sesame seed, everything goes into the blender. During meals, between the portions of pureed food, I give a piece of bread, cheese or ham half a nail size to diversify his eating. He, like every child, would like to eat what his parents eat. I am careful when I prepare the food for myself, and I make sure I always have something soft on my plate I can give him, so it won’t block the tracheostomy tube if it goes down the wrong way.
Between meals we play a lot, and Vince still sleeps once in the afternoon. The most important thing is to never leave him alone in a way that I cannot hear his breathing or his little voice, because it is important for the way of the trach to be always open for air. I have also noticed that when someone comes to visit us and I am in the middle of a conversation, I still keep one ear open, listening to Vince to make sure I hear what he is doing.
We still start the night with a baby monitor, and we use it until I go to sleep in the same room. I remember, while we were in the hospital two months after the birth of Vince, I kept thinking how I was going to pay attention to his breathing at night. I got used to the beeping machines at the hospital, but I couldn’t imagine how it would be at home. Then one of the nurses told me not to worry, I would notice it when there is something to do, even in my deepest sleep. Now I know this is exactly how it goes! We have had emergencies so many times, especially when he was a baby, when I woke to a clogged tracheostomy tube that needed suctioning right away. Vince is more than 5 years old, and I can count on one hand how many nights we have spent apart. I never thought this was humanly possible. Now I know it is not, only with the blessing of God. I was completely worn out by the time Vince was 2-3 years old, that was about as much as I could humanly manage. But then God gently taught me to believe in Him and in His everyday salvation. By now I know I couldn’t possibly do the nights in any way to stay mentally healthy and whole. Thank you Lord for never leaving me alone!
If we go somewhere during the day, I always have to check and see if I have all the necessary equipment at hand in case Vince’s airway is blocked by some secretion. We always have to have two suction machines, in case one breaks down, we have a backup. I made a small “first-aid kit” where I have everything I need to change the trach in case of any type of blockage. The contents of this kit are a pair of small scissors, a small brush (with this I can push out the mucus plug after I removed the tube), an extra tracheostomy tube, lubricating Lidocaine gel, extra band (to fasten the new tube), ambu bag (in case I need to blow in extra air), disinfectant cream, extra suction catheter, handkerchief, gauze. Now as I think through my list, I am noticing that I have butterflies in my stomach. I am only writing this down, because wherever we go, what is really at stake is me securing air for Vince, no matter the situation.
The tracheostomy tube is like a little open window right at the airway, which shortens the airway but skips the defense mechanisms (mouth, nasal mucosa, tonsils, etc.). After ensuring free airflow to the airway, the second most important thing if someone lives with a trach is constant bacteria filtering and humidification. There are many types of trach masks (mist collar which attaches over the trach to provide moisture), but generally speaking the important thing is that there is a spongy cap in front of Vince’s tracheostomy tube which provides these functions. By now we have managed to get such a cap that is an artificial nose and a speaking valve in one, so beside its role of bacteria filtering and humidification, it has the beneficial effect of Vince being able to give out sounds. These caps are disposable; we usually put a fresh one at the end of the tracheostomy tube every day, so they can provide real protection. If this is the first time you hear about this combined cap and would like to get it for your child, in Hungary you can do it through the following company: www.pro-klinimed.hu.
I remember when I found the company a year ago, there was such joy in me that they could help! Before that we kept searching the Internet, and my husband ordered these speaking valves from the USA, only to hear Vince’s voice. But we have been covered for the past year now, as the Hungarian National Insurance Fund (OEP) supports this company with the purchase.