Sunday, January 19, 2014

Feeding time

I'm typing this while I have dinner. No, I mean literally; while both my hands are on the keyboard, I'm ingesting a carefully balanced blend of one-quarter of the calories, protein, vitamins and minerals my body needs.

Yep, I finally succumbed to the feeding tube.

I really had no choice; the hole in my face was making it increasingly difficult to drink even the simplest smoothies, and I certainly was not keeping up a nutritional balance that would help my body to bounce back from treatment.

So last Wednesday I checked into MGH for what I assumed would be a one- or two-day visit.


Things started to go off the tracks when they discovered I had a fever. Now here's the thing: I'd had this fever for a while; I just never recognized it as such. Chills during the day? Yes, because I'm cheap and refuse to turn the heating up. Much rather sit under a blankie. Hot spells at night? Yes, because now the heating was on and I was still wearing nine layers of clothing.

Oh, that's what a fever feels like?

So they wanted to load me with antibiotics to get the fever down before doing any procedures. Fine.

Then I had the tube fitted. Not a terrible experience, because I was asleep for it, but I woke up feeling like I'd been stabbed in the stomach. Which I guess I had.


There were a couple of days of real discomfort, when sitting/walking/laughing was a sharp reminder of what had happened, but gradually the pain got better. We did some test runs with the feeding tube, and it seemed to be working fine.

Until it wasn't.

After some smooth, straightforward feedings, suddenly the tube would clog. It wasn't even possible to push water through it. The nurses tried a couple of usually successful remedies (warm water; ginger ale) but in vain.

So it was back down to surgery for a refit.

This experience was in every way the opposite of the first.

Although his assistant claims otherwise, I'm pretty sure the surgeon used no painkillers on the site. He worked fast, but that seemed more so he could get me out of the way. I actually swore, loudly and angrily, while on the table.

This was what actually being stabbed felt like.

Luckily, there was little extra wound pain on top of what had already existed, so healing continued normally. And this tube has — so far! — behaved itself.

Feeding isn't the worst thing in the world. Maybe the biggest change is that I'm now "feeding" instead of "eating." Four times a day, I feed.

Bagging up

And the process is pretty easy: flush the tube with water and attached a line that's connected to a bag of pre-made formula. Sit around until the bag is empty, which takes about 90 minutes. Flush with more water. Done.

For antibiotics, painkillers, etc, I have an oversized syringe that looks like something from the Hannah-Barbera Iggy Pop Saturday Cartoon Hour.

Cartoon syringe

Buuuut ... of course there's the other side to all of this. No more food by mouth. No knocking back a big glass of fresh orange juice or chilled apple cider or creamy hot chocolate.

No more choosing food by taste; all I get is the formula. It has an odd, insipid processed-vanilla flavor. The Boy, of course, thinks it's quite tasty.

No cocktails, though it would be hilarious to watch a bartender create something house-infused and artisanal, just so I could pour it into my syringe and inject it directly into my stomach.

Obviously this is just another thing to take in stride, just as I did with temporarily losing tastebuds and permanently losing the ability to open my mouth. I'm trying really hard not to think about food, not to dwell on memories of past meals or favorite ingredients. That way lies madness.

So what happens next? I'm going to do my best to make the most of these forced 90-minute time-outs. It's perfect for watching a movie or really falling into a book. Or even getting back into blogging more consistently.

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Blogger suzie sims-fletcher said...

At the start of this missive, I thought: oooh Kelloggs should be in on this writing.
Now -all about fashion -did you get (can you get) color choices in the syringe thingy?

And...if you don't mind my asking (I truly hope) can't open your mouth at all? or millimeters? Clearly I am thinking about your articulation....and - well, how do you brush your teeth?

Tell the boy to stop tasting off your "plate" (the nerve!)vanilla flavor, indeed.

Will be thinking of you during Downton Abbey tonight. All those hearths to be cleaned and all ;)

Much love

5:44 PM  
Blogger Cynthia McKeown said...

It is unfortunate (to say the least!) that you can't eat or drink - in addition to the feeding tube - for your own pleasure. I get that the feeding tube is to make sure you get all of the essential nutrients. But I have known other folks with feeding tubes who could eat as well. That so doesn't seem fair.

Thinking of you, sending love.

8:30 PM  
Blogger Kristin Shoemaker said...

90 minutes. Dear lady, DO YOU KNOW HOW MANY TIMES I WOULD NEED TO GET UP TO PEE in 90 minutes?

72. I would be up 72 times. But it seems fairly... Portable, the whole get up? Then, I don't know, IV bags are supposed to be portable... Damned things are on wheels, right? ...but they don't invoke scenic walks down the lovely linoleum halls.

I do hope it at least gives a nutritional balance and maybe frees and offers some better moments for enjoyable stuff.

10:53 PM  

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