Sunday, July 10, 2011

A Red Letter Day!

Okay, so the next sentence may not fit today's post title.

Yesterday I had surgery. Just outpatient but surgery nonetheless. No one gets really excited about surgery. But there I was, bouncing through the door and swaggering about. Why the strange behavior? I GOT MY FEEDING TUBE OUT!!!!

Yes, finally, I am now a one tube woman (PICC line). And a happy woman I am! A few things brought this about, both good and not so good. But it is out! The pictures here show what it looks like right after it was put in last February (What tube number was that?!) and the other shows what a PEG tube (feeding tube in the stomach) looks like. When I saw it, it looks so simple and non-threatening. Yet it amazes me at all it can do.

The good part is that my doctors actually let me get it out. I had gotten to the point (the not so good stuff coming up) that I had asked a few weeks ago about getting it out. The response was to wait a few more weeks, and if I maintained my weight gain AND if my lab values continued to improve that we could discuss it again.

To detail the good, 1. I have gained some weight and maintained it. AND 2. My lab values have been improving. I feel like I have fought for every ounce I have gained and it feels kind of weird on my body, but it's there. Tube feedings, either continuous or by bolus, started that out. Bolus feedings then became my preferred because it meant less time hooked up to a machine. I ended up with a disorder called "refeeding syndrome" where your body kind of freaks out from getting nutrition after starving for so long. That lead to weekly sessions with the Refeeding Specialist at the hospital. Through snacking and small meals, I worked up to the commitment of one meal a day, plus snacks. I also made a huge change in my life and gave up Diet Coke. Oh, we were such good friends..... Now it's no diet drinks but I do drink alot of 7-UP, approved by my Refeeding Specialist. This actually helps toward hydration while giving me calories. 7-UP is my bridge for what additional food calories I need until I get there.

The other good part is that while my Home Nurse is here twice a week, he draws labs. They detail an incredible amount of information, including nutritional status. There are actually labs that tell what level of starvation and nutritional depletion a person is in! So no matter what you might be tempted to report, they know the truth about what's going in. And those values have made an extremely slow, it seems, improvement.

Anyways, I had the evidence that I was working the program and doing better and when I finally asked out of desperation to get the tube out, I got a yes!!!!!!! And who wants a tube hanging out of their stomach anyways?

If you are happy enough with the above, you can skip the below. Why mess with a high point? But here are the reasons I wanted it out NOW.

I had been suffering from some significant pain because of the tube. I even went to the hospital for it. The theories are that 1. It takes up a lot of space inside a small stomach organ to begin with. Then you add the 50+ pills a day. Not so much room for food. 2. My stomach wasn't real fond of it and it spasmed a lot, which really hurt. 3. It was located near the bend in the intestine where it is common to have problems especially when you have motility problems as I do, for "things" to move further along. So it ended up being counterproductive to my eating needs because I knew the spasms and pain would only get worse. So last week after a couple of days in bed because of the pain, and not wanting to gasp or cry or otherwise show my pain to my children, it was just enough. I called, explained it was time, two doctors approved my request and the next day it was out. Hooray! Happy day!

No comments: