A Family Affair

A Family Affair

When my nurse suddenly called out sick last night, the nursing agency had no one to send instead. It was extremely last minute. Plus, it was Christmas Eve and few nurses were available to work in the first place.

That meant that my mother had to stay up while I slept, in case my ventilator malfunctioned or its tubes came loose. Because a humidifier is connected to ventilator tubing, water droplets collect in the tubing. So the water must be emptied every hour. I also need medications at the end of the shift. They need to be mixed up and put into my feeding tube.

The most difficult part for anyone taking care of me overnight is obviously staying awake. Fortunately, my two sisters volunteered to keep my mother company throughout the night. I've never wanted my disease to affect my sisters any more than it had to, but I was really touched by their willingness to help.

I obviously prefer to have my nurses take care of me. They're more familiar with my routine, from medications to how I like to be positioned in my bed. But I appreciated how my family pulled together at a time like this.

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.

The Interrogation

The Interrogation

Don't worry, I'm not suspected of a federal crime or anything like that. But I did have my pacemaker "interrogated" at a routine visit today to the electrophysiologist (cardiologist specializing in heart rhythm problems), meaning that information was downloaded from the memory of the device implanted in my chest.

My pacemaker, made by Guidant, is similar to the one pictured to the right and is about 1 centimeter thick and about the size of a doorknob, so it's really quite small. However, the left side of my chest, where it is implanted, does look bigger than the right side (in case any of you ladies out there were wondering why I only have half of a studly chest!)

Actually called an ICD (implantable cardioverter defibrillator), the device is not only capable of "pacing" my heart back into a normal rhythm, but can deliver a shock if pacing doesn't work. Pacing doesn't hurt, but I've been told a shock feels like a swift kick in the chest (hasn't happened to me so far). The ICD also constantly monitors my heart and records any unusual rhythms, even if it takes no action.

To download that information, a magnetic "wand" (left) is placed on my chest, directly over the device. The wand is connected to a laptop computer-like machine that prints a lengthy report. The process is completely painless, although I hate one of the tests that the machine performs because it briefly increases my heart rate. It feels like being in an elevator that is going down.

The report downloaded today was a good one. Over the previous three months, the ICD recorded one dangerous rhythm that lasted about a second, but it resolved on its own.

While people with Duchenne's are susceptible to fatal arrhythmias (irregular heart rhythms), I don't know anyone else with an ICD. It's a relatively new phenomenon. My ICD cannot stop the breakdown of cardiac muscle due to my disease, but it gives me a shot at surviving a sudden dangerous abnormal rhythm.

It's a chance I'll take, and that should come as no "shock" to anyone who knows me.