Monday, March 21, 2011

It's all good. New J-tube, adaptive goodness and testing theories.

* This post contains some potentially gross looking pictures of feeding tube stuff, don't tell me I never warned you*

It's not any news that life has been on the verge of insanity. Wait, that's pretty normal around here.

I guess I'll start with the introduction of Jerome 2.0

Yup, it's a Mic-Key button and I love it.
Getting it put in was a bit of an ordeal and expensive, but totally worth it. I got it done under sedation and a ton of locals. The tube didn't go in easy, it involved a lot of poking, digging and expanding. It also hurt. A lot.

For the most part, the swelling has gone down, it's stopped bleeding and far less sore. Balloon stomach wasn't so much fun.

I can sit up and stand straight now, but can't bend enough to put my back and SI joint where it belongs. Laughing, coughing, didgeridooing all still hurt and laying on my stomach is dodgy. Soon this will all be a thing of the past and Jerome 2.0 will be fantastic. I've been rocking the natural and Chinese medicine for this, and it all seems to be going well. My most current issue, is that my skin doesn't seem to like having the button too much.
I think it's a matter of compression from the swelling, irritation because the button is right on my skin and we can't forget about tape-rash. For now, I cover Jerome with Tegaderm while I'm in the shower to keep it dry. The button is bigger in diameter than the tube so the stoma had to be expanded. That was a blast! Wow, it looks like I've got a baby in there too. Yeah, no chance of that happening with this girl.

I love home-care. When I got out of the hospital, I was officially declared permanently disabled needing on-going care. There's a nurse that comes, asks me what I need and then a couple days later I get a box of supplies. It's a pretty sweet deal. Today's box included the Tegaderm patches I asked for, so I could cover up Jerome. I got them alright, they're the size of my head! My independence sometimes baffles a lot of people in the medical profession. I think having patients who take initiative and use other methods of healing freak them out a bit.

While we're on the subject of the tube, I had other interesting happenings going on just before I got Jerome 2.0 put in. Whatever was draining out of the stoma was irritating my skin. It was making it itch, crack and blister. Otherwise, everything else felt fine. I chalked up this theory that it was a PH issue in my stomach. Normally, or rather I used to be on an high-alkaline diet to control the reflux. When I had the pneumonia thing going on, I was hooked up to my pump pretty much all the time, with the exception of a few hours during the night. That meant, I wasn't getting anything alkaline in to help neutralize all the acid that likes to live in my stomach. My tube goes through my stomach to my jejunum, so whatever is brewing in there was I guess burning my skin. I decided to cut out anything acid forming and push the alkalines to see what would happen.

My theory was right!! Lemon water is my best friend. I can't taste the electrolytes I mix in, and the lemons which are an acid, turn to an alkaline when they get digested in your stomach. They help to break down food and absorb nutrients. It also tastes delicious, what more could anyone want?

Part of my package that involves home-care includes giving me access to other services I need. So now I've got some fantastic Occupational Therapists. I'm their first patient with EDS, like everyone else and they've been nothing but awesome about the whole thing. Every time I come out of an appointment with them I'm still baffled. It's the good kind though. In my last post, I wrote about the CMC/wrist splint we made. I love that thing, I can use my hands again without hurting myself.
I took a Sharpie marker to it because braces shouldn't be plain....ever. The writing is derived from a Japanese proverb that says "Fall seven times, stand up eight." Yesterday I checked to make sure I had written it correctly. Boy, was I glad to know that I didn't insult an entire culture or make an ass of myself.

I also got a few ring splints. At the conference this summer, I got to try on different kinds and was amazed that such things existed. I could use my fingers, and they wouldn't bend backwards... I'm still not sure exactly what I want yet and don't want to make any hasty decisions about them before I apply for the funding, the silver ones are insanely expensive.

This is what happens when I push on anything with my fingers. I think it grosses people out on the elevators when I'm pushing the buttons, hahaha.

Check that out!! Look how straight they are! It took a few days to get used to having fingers that didn't bend so much, but having more use of them is priceless.

Last week we made some adaptive awesomeness for my syringes. The surface area is small, and requires a lot of fine-motor skills. I don't have that anymore, and with bendable fingers it's a recipe for disaster sometimes. When you've got a syringe full or greens mix waiting to go in a tube and you're fingers slip, greens mix ends up every else but in the tube...When you sublux your fingers at the same time, it's a party!!

The pieces are easy to take on and off the syringes and make it so much easier to use.

Ta Da!!

Cool eh?! I'll have to get pictures of it in action, so you can get the whole idea.

When everything seems impossible and I want to surrender myself to EDS, I realize that I'm surrounded by truly incredible people who give me that extra push when I need it, in their own little way. They put wind back in my sails, so I can continue on with my own adventure and live my best possible life. I am continually blown away and so thankful for it all.

"Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world."
(Harriet Tubman)


  1. I like Jerome 2.0! He doesn't have a really long hose that needs to be taped to you, at least. Hopefully once the swelling is completely gone, you can get used to him quickly.

    Sending hugs and healing thoughts!

  2. Oh major congrats on the Mic-Key button! I've been trying to talk my doctors into a J-tube for a couple months now (note: trying, not succeeding) and a Mic-Key low profile jejunal only was my intended plan of action. They're just so much easier to deal with than several inches of tube hanging out of your belly, especially when you're young and refuse to be completely bedridden (my medical complications aren't as severe as yours are...I'm still holding down my job, but it's just getting so much harder to do given the fact that I can't eat or drink enough to sustain myself.....which I know you were at that point not so long ago yourself).
    I am really glad to see all the adaptive equipment and things that have helped you. There are so many things like that that I would love to get my hands on but my insurance is dragging their heels (my neurologist suggested having my rheumatologist sit on them, since most of what I want requires some kind of pain management or pain doc signature...I'll be giving her a call).

    No matter how many lemons life throws at us, we'll just keep making lemonade.

  3. wow the button look better despite the pain and everything you had to go through to get it.

    OT's are brilliant, they really make a difference.

    I wanted to write more but am really tired so will sign off wishing you well and thank you for positng.