I wouldn't say it's simple or totally painless to be the owner of a PEG tube or a trach, but both devices have improved my quality of life so significantly that I can honestly say I haven't felt physically healthier in several years. This is because I am getting enough air at all times and have a back-up plan to feeding by mouth, which was harder when I was getting less air, but is also harder for me than the average person because of weakened facial and swallowing muscles.
And it was just a little more than a year ago when my digestive system inexplicably slowed, stopped and rebelled completely. I now have options to starving to death if that happens again. I'm not being extreme when I say that last -- I lacked enough vital potassium and magnesium and I weighed less than 75 pounds when I started that four-month hospital stint last November. I'm over 5'11", by the way. Though many of my muscles are wasted and I naturally weigh much less than the average woman my height, it was critical.
So, the feed tube and trach are good things. And the feeding tube, in particular, is not as drastic or complicated as you might think. As a simple solution to delivering nutrition, it has existed since long before electricity. It's basically a straw, and modern technology allows an older, deteriorating tube to be replaced by a spanking new one in literally five minutes time. I'd definitely rather have my PEG tube replaced than get an ABG (arterial blood gas draw) and probably even a regular blood draw too.
To have the tube exchanged, I do return to the institution where my little stoma was born because they have the elaborate x-ray equipment needed for this and other laparoscopy-type fun. The most complicated part of the procedure is either the out-patient checking-in process or flinging me up onto the x-ray table with all my tubes still attached. Someone splashes Betadine all over my belly, they get the area sterile, the doctor shows up, they lower a drum-like x-ray dealie down low over my stomach, and then they do the deed. They have Novocaine and other painkillers available, but I've never come close to needing anything.
The doctor looks at an x-ray video of my stomach instead of my stomach itself while he threads a guidewire down through the old tube. He pulls that old tube out and there's a little pinch when the balloon that holds the tube in place inside my stomach pops out the stoma. Another little pinch when the new tube and balloon are threaded in. And that's it. Did I mention the technology of this is seriously cool to witness? It is.In the x-ray picture above, the small circular spot at the center of the image is the balloon where it sits in my stomach stabilizing the tube. All of the tube you see winding in a figure-eight shape is inside me, providing access to my stomach and also to my jejunum. The next pic is my Betadined belly and the port end of the tube, which has three separate openings -- the capped third one is only used to position the whole shebang.
The writing on the ports of the tube: "Gastric" goes to my stomach proper, "jejunal" leads to the upper portion of my small intestine just below my stomach, and "bal." possibly means "balance." Or "ballast." Or "balloon." Or sometimes, I like to think, "balsamic." If I get liquid nutrition overnight, it's in the jejunal tube, which is helpful when I have hints of the montrous nausea that required the bypassing of my stomach in the first place. And though I haven't had any sort of virus since the installation, I plan to make great use of keeping myself juicy with plenty of healthy fluids by way of these tubes should the need arise.I keep the tube taped to my stomach most of the time. In the picture it's just basic medical tape but usually there's a fancy sticker gizmo with a tab to hold the tube in one place. Otherwise the tube hangs down from my stomach and flops around like a penis I don't know what to do with.
Have we reached TMI yet? Anyway.
All of the above replacement business is actually just an excuse to go somewhere excellent for lunch. Lately, it's the Midtown Global Market in the renovated Sears building on Lake and Chicago in Minneapolis. I had Jamaican jerk chicken and fresh sweet potato pie three months ago courtesy of West Indies Soul. This time: octopus taco from La Sirena Gorda. It was spicy and delicious, though I had hoped for a larger octopus to make the sacrifice so I wouldn't have to eat little heads and collections of legs whole. I get creeped by eating whole creatures in one bite. But otherwise it was yum and I recommend it for the non-phobic. For dessert, the mysterious Men's Pocky bought at United Noodles, the Japanese grocery.Aside from the Twisty-like description of lunch, I'm hoping that my explanation of my PEG tube and the simplicity of getting it replaced stands in stark contrast to the idea that because Terri Schiavo owned one, it was one sign her life was over. It's also important to note that court orders for removal and reinsertion of her feeding tube were more complicated than what I've described above. When you're threading a new tube in and not replacing one already there, it's a bit more invasive and definitely involves more pain.
Facts of Schiavo's health aside, all of the feeding tube removal business was to make food and drink inaccessible and was not at all required for denying her food and drink -- the removal of the tube is how modern medicine makes starvation legal and, heh, ethical. It's akin to throwing all your insulin away and then saying "well, there's no way now to save this guy in diabetic shock." It's a legal maneuver that shouldn't be confused with either the actual moral or medical issues of care for any particular individual.
That's all I have to say about Schiavo for now. It always exhausts me to contemplate or discuss the whole mess.
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