Dancing with the food pole

The bruises are fading, the swelling is going down, and the stitches itch like crazy.  These are all signs that things are headed in the right direction.  While my family has learned to speak some "trachese" and I am quick with the magnadoodle, I am looking forward to looking at other 'speaking' options with the speech paths at OHSU on Wednesday.  Those things seem to be moving forward.

What is not moving forward quite as nicely is eating.  There are some challenges to being fed through a tube into your stomach.  I've had reflux issues (which I never had) as well as, shall we say, other gastric challenges.  It isn't really a big surprise switching from a neurotically organic, home grown diet to 7 cans of chemical cocktail a day.  I know a better attitude about it will help, but I'm not there yet.  Time is another issue.  1,600 mL is a lot of liquid.  It takes time to get that much into your belly.  Hours of time. Hours of time hooked up to a pump on an IV pole.

While our house is not overly small, it does have a lot of stuff in it.  We are not going to be on a future episode of Hoarders or anything, but there is stuff.  Gaps don't seem too narrow until you are dragging a pole with you.  Those cute throw rugs in the bathroom aren't nearly as darling when they are bunching up under the wheels as you are entering in great haste.  We are fortunate to only have a couple of steps in a couple of places.  Too bad they are all between here and where I want to be.

The pump does have a cute little back pack so I could wear it and no one would know I was eating.  Well, except for the weird mechanical grinding noise it makes.  Or the screaming bells when something is up.  And the food is the perfect medium for growing bacteria, so don't let it get too warm.  A backpack full of feeding formula, a pump, and some ice sounds nice and light, doesn't it?

We are still playing around with the schedule.  How fast can we pump it in without it coming back up (very unpleasant, and somewhat dangerous)?  How many hours am I willing to spend hooked up?  Feeding over night has been a fall back position, but this means I need to sleep propped up.  Not all that comfy.  Add in paranoia about catching the feeding tube on something and trying to keep the oxygen humidifier on my face, and it becomes not all that restful.

There are websites devoted to "blenderized" foods.  Basically, this is making your own tube feeding out of actual food.  I think that is the way I will go, but at this point, just the eating takes so much time, who has time for the prep work?  There is a chance I will have some swallowing ability, so I may be able to take some liquid calories by mouth.  I do have some taste buds on the back of my throat.  That is how I know that the canned food's purported "vanilla" flavor is really not so much.

Anyone with any background on this topic is certainly welcome to weigh in.  I know I am far from the only person in the world who is getting their nutrition through a tube.

I would be disingenuous if I didn't admit that today was a bit of a rough day.  Lesley came for a visit, thank goodness, because otherwise I might have gone farther down the dark path.  I finally had to pull myself together and go outside.  Wouldn't you know it, the first year I managed to grow some decent Brussels Sprouts (my favorite), I can't eat them.  I also started putting the mountain of stuff I canned away in the cabinets.  My family still needs to eat and I still want them to have this good food.  I just need to look at it more as a hobby for me instead, like knitting.  And what the heck was I thinking making this much green salsa?????

A big thanks to Stan and Lori for schlepping Karissa to/from riding lessons and keeping her busy this afternoon.  Also for saying I look good.  Everyone keeps saying that.  I do not think that word means what you think it means.

Until tomorrow, Love, Kiara