Arden has a Cuffed Trach

Arden’s trach tube is a 3.5mm Pediatric Bivona Flextend cuffed trach tube. To most people, that probably sounds like gibberish. To us, it outlines the diameter, length and style of his trach tube. In my opinion, the last part is what impacts his current situation the most. Arden has a cuff on his trach tube. 

Essentially, this means that the tube sits inside his trachea, and there is a small balloon around the tube that we fill from the outside with sterile water in order to keep it inflated. While inflated, the cuff ensures that the pressure Arden receives from his ventilator does not leak out. It helps to ensure that the inspiratory and expiratory pressure that is specifically set for his needs is maintained. Children with tracheostomies also have the risk of aspiration. Aspiration is when you accidentally breath fluid into your lungs. The cuff ensures that secretions (saliva, mucus, etc) from Arden’s mouth do not accidentally leak back into his lungs. No air leak, and no fluid leak. Those are the positives. The hard part is that when air isn’t able to leak around the cuff, air also doesn’t pass over the larynx. 

Without air passing over the larynx, Arden isn’t able to make audible sounds. With the trach tube in place and cuff inflated like it needs to be for his optimal breathing support, he cannot cry, coo, laugh or chatter out loud. He knows how. When we take his cuff down to change the sterile water, we can hear his voice. When he was using his “scuba” BIPAP mask throughout July 2020, he could cry out loud and we could hear his tiny hiccups. But now, he’s silent. We get to see his adorable smiles and laughter. He shows us when he’s happy and when he’s sad.  As his mom, I’m very in tune with how he’s feeling, and the cues that he gives for his needs. But unlike moms who hear their babies on the monitor and go into the room to check, I need to be with him at all times. 

In order to make sure that he’s okay, I need to be able to see him. However, I’ve learned to listen to his breathing in order to travel short distances away. The Trilogy ventilator that he uses is very responsive. When he takes a breath, the vent is triggered to give him the pressure support that he requires. I can tell by listening to his breathing and the vent if he’s sleeping, stirring, awake or needs a suction. If he’s in his room having a nap, I can go into the kitchen to make a cup of tea. I can tidy his toys or put the dishes in the dishwasher. And sometimes I get ready in the bathroom next to his room. Quietly. Sometimes if I’m out of the room and I hear something irregular, I’ll hold my own breath so that I can hear his. Just to hear the rhythmic sound of the vent when I know he is sleeping is reassuring. 

Arden might be quiet, but he definitely has all kinds of ways to show us his personality. He has various smiles for different moods, and a special one reserved for when he hears momma’s laughter. He has mastered a mean side-eye. When he giggles we can see his cheeks wiggle and his chest rise and fall quickly. He has recently learned to give “fives” and he loves the sound of his hand smacking against ours. We regularly show various ASL signs to Arden, and I know that one day he’ll pick up on them and they’ll help him to communicate. He’s so intrigued by everything that we do. Arden has shown us that where words or sounds fail, the heart speaks. And he certainly captures the heart of everyone he meets. 

XO, Rayel