as small as a world and as large as alone

3:16am July 5, 2014

Toooooooooooooooooobs.  Everywhere!

GJ tube (half goes to stomach, half goes to intestines, stomach for draining out of my body, intestines for putting stuff into my body).

And bipap hose, so I can breathe at night.  And rarely during the day if I get weak enough, but that doesn’t happen much now that I don’t get adrenal crisis much anymore.  But I still have central and obstructive sleep apnea.  OSA is really common, CSA is really rare, somehow I got them both, and so did my mother.  Neurological anomalies don’t run in my family or anything.

When IV nurses were pushing my doctor to get me a port so they would stop having to torture me with PICC line insertions and the like, my doctor actually said “Between the GJ tube, the oxygen, and the bipap, you’ve got enough tubes already, so I’ll get you a port if you need one but only then.”  He has a point.

Now my dad is learning the joys of PICC lines for chemo.

Tubes, tubes everywhere.  Tuuuuuuuuuuuubes.

People are so damn afraid of tubes.  They’re just tubes.  They’re just plumbing.  We have natural tubes throughout our body.  All the artificial tubes do is give the natural tubes a little help.  There’s nothing scary about a tube.  It’s just like what’s inside your body already, except it allows your body to continue functioning when otherwise it might shut down or get painfully dysfunctional.

I love my tubes.  I love my tubes.  I love my tubes.  That will never change.  My tubes saved my life, and I can’t help but love them.

Sometimes I think my feeding tube is alive.  Especially when I’m burping my stomach contents and it makes all these bizarre noises, it’s like it’s talking in tube language.  Sometimes it makes thoroughly rude-sounding noises, sometimes just funny ones.  Like prolonged squealing.

Gross-out stuff under the cut.  Don’t say you weren’t warned.   (If there’s no cut, just assume anything past here is gross.)

And then there’s the tube worms, which are one of many worm-names we give to the food clogs in the j tube.  Sometimes we pull out entire families of tube-worms in the morning while doing our declog routine.  They are both magnificent and disgusting.  Some of them get up to four inches long, and coil up inside the syringe.  Sometimes they tangle around each other and look like an tube-octopus.

And don’t get me started on the blood clots.  I’ve got an unhealed wound in my stomach and sometimes it bleeds into my g-tube.  Sometimes instead of bleeding it just clogs up the tube with clots.  A staff person referred to one of them as a ‘blood fetus’ because it was  huge (really huge, had to be suctioned out by a syringe, which it then expanded inside of) curled up on itself, and nothing has been the same since.  >_<

We tend to come up with ways to outdo each other, grossing each other out.  Like… okay the stomach has a mucus lining, to keep it from digesting itself.  And the mucus comes out the stoma site, you can see a little bit of it in the picture if you look hard enough.  It looks, smells, and behaves exactly like snot.  And I was chewing gum at the time.  And I said “yummy”.  And my staff person said “like gum!”  And we continue along those lines until one or both of us is too grossed out to continue.

Sometimes, though… I see her look into the burp cup (where the contents of my stomach go into when we drain them), open her mouth for a second, breathe in, shut her mouth again, and clamp her lips shut really tight.  That’s when I know she’s come up with something really devastatingly disgusting to say, but that she doesn’t want me repeating it to everyone.

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