I changed my feeding tube like a champion and you can too!

I changed my feeding tube by myself!!!

Actually, Betsy did most of the work, but I'm taking the credit because that's what kind of man I am.

I wrote a while back that I normally get my tube changed by my GI, Dr. Spaceman, or, as he prefers, "Dr. O'Connor." So, last year, I found myself lying on his exam table trying to think happy thoughts as he casually ripped a tube with a disgusting glob of partly digested food on the end out of my stomach. While we examined the old tube with a mixture of revulsion and scientific curiosity, Spaceman exclaimed, "You know, you could do this at home if you want."

Whaaaaaaaa?!?!? Yes, as it turns out, I have a G-tube with a tiny water balloon inside my stomach, holding the tube in place. Changing the tube is as simple as deflating the old balloon, or 'Old Bag,' as I affectionately call her, gently pulling out the offending tube, inserting the new tube in the tight, moist stoma (nothing sexual about that step), and inflating the young, hip new balloon, or 'Pretty Young Thing,' as I've dubbed her.

I'm sure you have questions like:

"How did you do it?"

"Is this something I can do alone?"

"Is this lump on my left butt cheek serious?"

Well, to answer your questions, a) I'll tell you; b) If you have a balloon tube, YES; and c) You should probably get that checked out.

Let's take this step by step:

Prepare a sanitary space for the operation

It helps if you haven't showered in weeks

This is our bedroom.  Betsy washed the sheets only a few moons ago and our fat, flea-ridden dog hasn't drooled on my side in a couple days, so it's about as sanitary as it gets around here.

Note the clean washcloth for catching stomach contents 

See how happy we look before the pain and horror?

Ensure your replacement feeding tube is a suitable diameter and has a working balloon.

Dr. Spaceman gives us replacement tubes whenever we ask. He's cool like that. Other people find it beneficial to get their own tubes through a supplier, either because they don't have access to their own Spaceman, or because their insurance company is trying to finish what Darth Vader started. I personally do not have links to feeding tube supplies, but if he hears of any, future Brian will post them here--future Brian is sooooo much better looking than present-day Brian.

It's a good idea to make sure the new tube is the same diameter as the tube in your belly. If it's too thick or too thin, it causes irritation and extra granulation (crusty stuff) around the stoma. It could also cause gastric leakage (stoma puke) at the site. Tube diameter is commonly expressed by the French scale because French men are good at measuring really tiny things. **ZING** Honestly, I've no idea where it gets its name but 1mm equals 3 French (Fr). So, a 9 Fr tube is 3mm; a 12 Fr tube is 4mm; a 15 Fr tube is...you get the idea. You're a mathematical GENIUS!!! Tubes run anywhere from 8 Fr up to 24 Fr. Mine is 18 Fr, which seems plenty big enough for blended food. I can always tell when they put in a slightly larger 20 or 22 Fr tube because it irritates my tube site quite a bit.

Feeding Tube Rainbow

Take the new tube out of the packaging and try pumping up the balloon. The feeding tube has 3 ports. Two of them are for food and medication (and alcohol). The third port is the colorful one on the pictured tubes above. This one is for a separate tube that runs inside the main tube and leads to the balloon. My syringes come with a small luer adapter that allows them to fit the balloon port.

The luer adaptor, or catheter tip, is the blue do-hickey on the end

My own spotlessly clean tube, complete with balloon access port

With the luer adapter in place on your regular syringe, or using a smaller syringe specifically designed to lock into the balloon port, try pushing water into the new balloon until it's fully inflated. All the balloons I've had are 20cc, but I think there are smaller balloons out there. It should say right on the tube. Once you've blown up the balloon, look for signs of leakage. If the balloon is leaking, feel free to squirt the water on your loved ones before you start panicking because you have no extra tubes.

She's pumping up the new balloon and Grace is still learning how to take pictures

Prepare the new tube for insertion.

Once the old tube has been painfully ripped from your gut, the new tube will need to be jammed into place through the nasty, bloody hole so you can continue to do that keg stand you were right in the middle of (has anyone tube fed alcohol while in a handstand? Challenge accepted!!). In order to make the tube penetration as painless as possible, it's a good idea to lube your tube. Dr. Spaceman kindly provides a packet of lubrication for us to use, but I'm told K-Y Jelly will also do the trick. 

Betsy is lubricating the tube and my feet are looking pretty stinky

Note Betsy's latex gloves, which she wears whenever she has to touch me

Deflate the old tube's balloon and gently remove it.

I've been entertaining myself watching YouTube videos of other people demonstrating how to change feeding tubes--I have no life. They always pull out the old tube like it's the easiest thing in the world. Right in the middle of a sentence, the tube slides right out like they're pulling a meat thermometer out of a turkey. In my case, it's rather painful. This crusty gunk slowly builds up around the tube, so even after I fully deflate my balloon, there's still a sizable gob for me to yank out. I like doing this part myself, so there's no surprises. The best way to do it is just not think, and yank the sucker out. Once the tube's removed, Betsy tries to avoid looking at the disgusting glob on the end of my tube so she won't puke all over our sanitary space. Also, we Iike to force our daughter to witness the whole procedure because it's always fun to listen to her screams of disgust as she runs to barf in the toilet.

Grace's photography skills need work, but my balloon is being deflated here

Insert the new tube and inflate the balloon

Once the new tube is well lubricated, insertion is pretty smooth and painless. You should do it as soon as possible because the hole in your stomach will immediately start to heal and close back up (like a pierced ear) if there's no tube in it. So, if the new tube doesn't work out for whatever reason, you'll want to get to the nearest ER before the hole closes up and you have to go through surgery to get a new one placed. If you're in some third-world slum or the middle of the Australian outback, and your new tube is a dud a) this probably isn't the blog for you and b) you're screwed. Wish I could help you out. Maybe try duct tape? It worked for NASA.

With the new tube inserted, slowly inflate the balloon to hold the tube in place. We were told to inflate with distilled water, but we normally just use tap water with no adverse effects. Next time, I'll try inflating with Jägermeister so I get a pleasant surprise when the balloon pops. Don't over inflate because the balloon will burst and you'll have to take a trip to the ER, unless you're a tube feeding virtuoso and you have a second replacement tube. Pro Tip: Even with a burst balloon, leave the new tube inserted on the way to the hospital so the stoma won't close up.

Here's a professionally made video we had Grace shoot while Betsy inserted the new tube. Note the disgusting gob of digestive gunk on the end of the old tube:

Did I hear someone say "Academy Award nominated short film?" Pretty sure I did.

Voilà!!! You just changed your tube like a pro, and now you can do anything! The IKEA bunk bed/desk combo for your daughter that came in 9 boxes? DONE!! The neighbor's kid who broke his femur with part of the bone protuding from the leg and a sucking chest wound? COMPLETELY HEALED!!! Einstein's elusive theory of everything that explains all of life's astrophysical mysteries? PIECE OF CAKE!!! With a new tube, the world is at your feet. Go forth and try not to let your three year-old niece wrench the new feeding tube out while she giggles at your agony.

Distractions

Pain.

Pain, discomfort, and general 'suckitude' have been my constant companions the last few months. 

Actually, I've had tingling, burning pain ever since I began to feel the harmful effects of radiation more than a decade ago. But that pain was manageable. Just take enough neurontin--a drug to dull nerve pain--and I could ignore the pain. Relegate it to the back of my mind. On the pain scale from 1 to 10, it was a 3: always there, but I could live with it, like a tight fitting, old leather shoe. 

But this recent agony is much worse. For the first couple weeks, it was constant aching in my back; sharp pains in my armpit, across my chest; burning down my arm that turns into stabbing pain whenever I tried to lift anything in my right hand. Lately, much of the pain has settled back down to the 'manageable' variety, but the discomfort, crapuation (that's defined as "a situation of crappiness;" I'm making up words left and right), and a dose of depression are still with me.  

How did I get here? I was getting back into Crossfit and looking at getting back to normalcy after the skin cancer surgery I had in January.

I should catch you up on events since my last blog post concerned my decision on whether I should get a skin graft or a skin flap after surgeons cut out the skin cancer on my neck. In the end, I went with Vanderbilt's doctor, and asked him to just put a skin graft (a piece of skin from my thigh) over the wound, rather than the much more complex flap surgery. I figured I could always get the flap surgery down the road if the graft didn't take.

Good news! The graft was successful. The surgeon successfully cut away all of the squamous cell carcinoma and the skin graft took to my neck...for the most part. There were still areas on my neck that hadn't healed; areas that needed wound management. I started going to a different wound care clinic here in Knoxville to, ideally, finish the healing process. I started hyperbaric oxygen, yet again, to hopefully improve blood flow in the area. The wound is now looking better than it's looked in a long time, thanks to this new clinic's ministrations, or the hyperbarics, or both of these. Yea!!!

And yet, the wound is infected. Not with just one bit of nasty bacteria, but two distinct colonies of the little bastards. Pills won't be enough to kill these suckers; I have to do IV antibiotics for weeks. Hyperbarics takes up three hours of my day. Now I have a PIC line--a permanent IV going up my arm and into my chest--so I can spend more of my day getting drugs pumped in my system to kill the infection, and all the fun side effects that come with hardcore antibiotics.

Back in May, the pain was really getting to me. 

I spent more than two weeks mostly bedridden from pain. I complained about it to my wound care doctor and infectious disease doctor enough that they did an MRI of my neck and chest to see if my infection had possibly spread. Happy news (it you're in the pro-bacteria camp), it looks like the infection has spread, at least to my clavicle bone. So, instead of two weeks of IV antibiotics, I'm doing six weeks. 

Not only do I have an infection in my bones, but there is now exposed bone at my wound site and an unexplained hole next to the exposed bone that Betsy has to pack with gauze every day. I swear though, the wound is looking better! There's just a bit of bone sticking out and a fun little hole that I can use to smuggle drugs across the border.

In the meantime, what can I do about the pain? My wound care doctor said a steroid shot to the area could alleviate pain, but that would also give a nice boost to the tiny bacteria monsters I'm trying to get rid of so steroids are a no go. Fortunately I have a drug my brother started me on when I was a kid. It's gotten me through many difficult periods in my life and I've been helplessly  addicted to it. Not a day goes by that I don't crave its soothing effects. Betsy asked me the other day how I'm dealing with this. She's been having a difficult time with the constant doctor visits and a husband who's basically good-for-nothing around the house. She's the one holding the house together. Am I in pain? Am I losing sleep? Am I feeling constant frustration at having to sit on my ass all day (can't exercise with a PIC line). Sure, I'm all these things, but I'm dealing with it. I'm not moaning about it constantly. I'm not screaming, "Why Me?!?" shaking my fist at the sky. 

Books. Books are my drug. Betsy knows about my addiction of course, but doesn't realize how much reading helps me escape. Not just any books either. Fantasy. Science Fiction. Books that give me other worlds beyond this one. I can sink myself so deeply into a good fantasy novel that I'm completely oblivious to the world around me. 

As with any drug, my addiction to books carries risks. I can get so engrossed in Pierce Brown' or James S.A. Corey's action-packed science fiction that I lose track of the good things going on around me. But, for times like these, when I'm tethered to an antibiotic pump all day, books really help me keep my sanity.

If you've no interest in SF/F then read no further. I intend to thoroughly geek out.

What are the latest books that help me forget my pain? I've been enjoying Joe Abercrombie quite a bit. One of the characters in his First Law series, Glokta, is a crippled man who was brutally tortured in a foreign prison, to the point where every moment is pure agony. He's unable to chew food, and walks only by painfully dragging one foot over the ground. Glokta used to be a dashing swordsman, loved by the people, but now they look at him with disgust. Since he was set free from prison, he's taken a job doing something he's uniquely qualified for: torturing  others into giving bogus confessions for his government. I know it sounds like an awful story, but Glokta has a macabre sense of humor that I find hilarious, and somehow reading about his loneliness and various ailments makes me feel better about my own problems. 

Of course, there are many other authors I've been into reading. As a kid, I had Lloyd Alexander, Alexander Key, Terry Brooks, David Eddings, Margaret Weis & Tracy Hickman, R.A. Salvatore, Alan Dean Foster, Raymond E. Feist, Orson Scott Card, Tad Williams, and Robert Jordan. More recently, the authors I've been engrossed in are Scott Lynch, Patrick Rothfuss, George R.R. Martin, Robyn Hobb, Brandon Sanderson, Neil Gaiman, Pierce Brown, James S.A. Corey, Brian McClellan, Brian Staveley, John Scalzi, Andy Weir, and Lev Grossman (in no particular order).

I'm always on the lookout for books with strong female protagonists that I hope Grace will one day read, if she ever gets off her iPod. She's read all of Harry Potter, but it's been hard to get her to enjoy other series without forcing her to do it. I have a hard time reading to her because I get out of breath easily when I read out loud, and it makes me dizzy. I loved Anne McCaffrey's Pern books and can't wait until Grace reads Dragonsong. More recently, there have been excellent series by Samantha Shannon, V.E. Schwab, Leigh Bardugo, and Marie Brennan. Of course, the one thing all these female protagonists have in common is that they're white. N.K. Jemisin and Ann Leckie have really cool books with non-white female leads (in Leckie's case, the protagonist is a spaceship, but she's mostly written as female), yet I'm still looking for fantasy or science fiction with an Asian female protagonist. Any suggestions?