Breathe Easy

Breathe Easy

I remember some of the misconceptions I had about tracheostomies before I got one six years ago -- that I would be more prone to infection, unable to speak or eat easily (if at all), that the trach would be painful, that it would drastically alter my way of life.

So as I addressed a group of parents whose children have trachs, today at a conference sponsored by the Pediatric Airway Program at the Children's Hospital of Philadelphia (CHOP), I did my best to allay their concerns as much as possible, although every situation is obviously different from mine. I must admit that, despite the fact that I am still a patient at CHOP (pictured above with me is my otolaryngologist, Dr. Karen Zur), I was worried that my experiences might not translate very well to the experiences of parents with infants or young children with trachs. However, it isn't always possible for such parents to know how things like suctioning or changing a trach feel from their children, who cannot communicate on an adult level. No parent wants to subject her child to pain, so hearing from me that say, changing my trach doesn't hurt, is important.

Look, no one would choose to have a trach if it wasn't necessary. It was never something I really wanted and if there were a realistic option, I would have it taken out. However, I doubt that I would be here today had I never gotten a trach. With it, though, I am able to enjoy a pretty decent quality of life. At the end of the day, that's really all that matters.

Out with the Old, In with the New (Part II)

Out with the Old, In with the New (Part II)

I had my trach (tracheostomy) tube changed last night. Unlike my g-tube changes (see post from 10/5/06), trach changes can be done at home, as I lay in bed. Typically, I have it changed every other week. It is easiest to do with two people, usually my mother and a nurse. One person pulls out the old trach and the other person inserts the new one. I have had my tracheostomy (hole in my trachea) for four years, so there is less of a rush to get the new tube in before the hole starts to close, but the tube should be inserted quickly.

Once the new tube is in, the velcro ties are attached and a gauze pad is placed around the trach. (above, right). An adapter (the blue piece seen in the picture) is also connected; my ventilator tubing is hooked to the bottom, while the top (clear part)can be opened for suctioning.

The curved tube (above, left)is 6.5 mm in diameter and about 9 cm long and has a "cuff" or balloon that can be inflated with water by connecting a syringe to the piece with the thin tube attached to the trach, to ensure the maximum amount of air reaches my lungs without escaping through my nose and mouth.

However, I never fully inflate the cuff because if I do, air cannot reach my vocal cords and I am unable to speak. (Imagine me speechless!)

During the day, I keep the cuff fully deflated. At night, I inflate it partially so I am still able to call my nurse when I need assistance.

Changing the trach doesn't hurt as long as the new tube has enough lubricant on it (a little K-Y jelly does the trick). However, changing it tends to stimulate the trachea to produce more secretions (mucus), so I usually need more suctioning afterward.