January 13 – The Foodie is (slowly) Making a Comeback

by rwkinney

Today marks 24 days post-op, and I think that overall I’m making really great progess in my recovery. I’m doing better and better with solid foods, and while I’m no where near ‘normal,’ just yet, I am starting to see how I can eventually work toward that.

This weekend my sister flew into town so we’ve got a bit of a full house—Its nice to have everyone around, and Katie is newer to the scene so she doesn’t mind it as much when I ask her to get me {fill in the blank} when I don’t feel like getting up 😉

For the past 4 days I have been off the feeding tube, and have been maintaining a steady weight. I’m probably nowhere near 2000 calories per day just yet, but I think this shows I’m at least consuming enough to maintain my weight. As I’ve said before, on average most patients level off somewhere between 10-30% of their previous body weight. Right now I’m sitting right on that 10-15% line that I’d hoped for previously, so I just need to keep up the good work! I suspect this weight maintenance is coming in large part as a result of my extremely limited activity. If I were to start a workout regimen right now (not that I could), I would probably see the lbs drop off. But, that’s ok. I can’t really start any strenuous activity again til I hit that 8 week post-op mark, so I think I have plenty of time between then and now to work on the diet. Slow and steady.  Our neighbors, Pete and Bailey, had us over for dinner last night—Bailey whipped up a really great soup, which I ate too fast. I got stomach cramps and had to have Drew walk me home early. Just when I think I’ve got it figured out! I guess I need to stop eating things that taste so good. Maybe then I’ll slow down a bit.

Also, not to bury a lead or anything, but its looking as though my feeding tube will be coming out early—this is good and bad. Good, because I hate this thing and just want it out of me. Bad, because the reason it is coming out early is because the site of the tube is extremely irritated and likely a bit infected (which, for the record was exactly why I was worried about having any feeding tube at all in the first place). It has always oozed just a little bit (sorry, graphic), which I am told is fairly normal. Despite changing the dressing regularly and cleaning it thoroughly each time, I think having that moisture  and whatever gastric juices were mixed in there sitting against my skin just irritated it to the point that a little infection was able to develop. This morning it was really painful—every time I moved felt like someone was putting a drop of rubbing alcohol in a cut. We had to soak the dressing in warm water to get it off of my skin because the ‘ooze’ had dried. Overall, extremely unpleasant, definitely gross. We consulted with the visiting nurse and with the surgeon’s office, and all agreed that if I wasn’t using the feeding tube, and it was causing this issue, we may as well schedule to remove it sooner rather than later. I agree!

Originally, we were planning to drive down to Boston tomorrow because the surgical team really pushed that they would prefer we be seen by the team who originally performed the surgery.  I could understand their point and didn’t fight them too much on it—in general, I was just happy to be getting this taken care of and having to drive 4 hours was a small price to pay. About an hour later they called back to get the contact information of the team that had made my original diagnosis at Fletcher Allen (our local hospital) before I went to Boston. It seems they had a change of heart and, considering how simple of a procedure it is to remove a feeding tube, they will try to coordinate my getting in to see someone at Fletcher Allen today or tomorrow.

That’s all for now—I promise to do a more detailed food update once we get this feeding tube issue resolved—that’s really the main focus right now!