Still Miles to Go

In case you hadn’t heard, I’m home! I was discharged on Thursday evening and have since spent 3 glorious nights in my own bed. Unfortunately, discharge does not mean that my issues were resolved. Rather, the severe acute issue has passed (temperature stabilized and my severe distension decreased) and now we’re just dealing with a chronic decompensation of my previous baseline. I had to beg and plead to get released, but my GI motility specialist was on my side so the internist gave in. Unfortunately, my GI motility specialist also came with bad news: I needed to stop taking in food by mouth. I’m getting full nutrition via IV so all that needs to be and should be taken enterally is medication and fluids. Otherwise, I’m looking at hospitalizations at least once every 2-4 weeks for the same issue.

I think I’m still in a bit of denial about how bad things are, but I’d rather be in denial and happy than depressed over reality. And maybe it’s not denial; maybe it’s just optimism.

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[This is Part 2 of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week. As I noted before, life got in the way during the actual awareness week so I’m raising awareness on my own schedule.]

I thought I’d leave a window open and allow you all a peak inside life with a tubie – complete with pictures and the extensive vocabulary one acquires with this life. Due to the expanse of this vocabulary, I know I’m going to miss something. If I’ve missed something you feel important, I encourage you to add on in the comments section.  I also want to issue a warning that there are some pictures in this post of medical interventions; if this makes you uncomfortable, I advise you not to read on! 🙂

I’m going to start with the most important word of all:
Tubie – Although some use this word to describe a person with a tube, I prefer to use “tubie” to describe the tube itself. It can refer to an ng-tube, an nj-tube, a g-tube, a j-tube, a gj-tube, or even a central line used for TPN or other nutrition. All of these will be addressed further in my next post on the types of tubes, what they do, and who might have one. I want to note that I realize it’s commonplace for some to refer to tubie-users as “tubies” themselves; as a personal preference, I choose not to define someone based on the adaptive equipment they use, but rather on who they are despite that adaptive equipment.

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