02-01-2003

Astrid's reflux was the major reason that she ended up with a g-tube. She was not gaining weight well, partially because she couldn't eat very much, and partially because she was throwing up much of what she did eat. At the time, her weight alone was not bad enough to warrant a g-tube, though she was off the bottom of the growth charts a little bit. However, she started to have trouble breathing due to the damage that the reflux was doing to her lungs (she was aspirating into her lungs some of the stomach contents when she refluxed). The g-tube came as part of a surgical procedure to correct her reflux -- a Nissen fundoplication. Some surgeons will do a fundoplication without a g-tube, but we are very glad that we were not given that option. The g-tube has been a very wonderful thing for Astrid.

Before Astrid got her g-tube she was spending a lot of time and energy each day eating, which was leaving little time and energy for other things. She was aware of her surroundings, but would tire more easily and would totally shut down and go to sleep if there were more than just a couple of people around. She did play and attend therapy, but she also slept a lot.

After Astrid got her tube, she really blossomed. She began to love crowds of people (especially children), and took a greater interest in her toys. She had more energy to play and learn. She gained weight and grew taller. It is hard to say if the major factor in these changes was nutrition or the relief her lungs got, but the changes were clear. Overall, she became lots happier.

It turned out that Astrid was aspirating when she swallowed as well, and so she has not ever really eaten much by mouth since she got her tube. (I don't think this is typical.) She doesn't seem to miss it at all, even though she loved to eat before.

We all love her tube, though it did take some getting used to. At first, I was really nervous about touching it because it sure does look like it should hurt. After a little while, though, it became just one more perfectly "normal" think in our lives. I don't even really think about it anymore. I feed Astrid in public if we're out, and it isn't a big deal. I've trained a few different sitters to feed Astrid with the tube, and even a couple of 4 year olds have done feedings with my assistance. (Astrid loves that kind of attention.) It is great for giving bad tasting medicines, and for giving fluids when Astrid is sick. It has kept us out of the hospital on a couple of occassions because we've been able to keep Astrid well hydrated.

Having a tube doesn't stop the kids from being on their stomachs, or crawling, or any other physical activity. Astrid has a hard-shelled back brace, and there is a hole in it for the tube. Astrid has a MIC-KEY button now (which replaces the long tube that is put in initially after surgery). We do keep Astrid's button covered just so it doesn't get accidentally pulled out. We've all (father, mother, baby sister, even Astrid herself) pulled it out by accident at one time or another. (Perhaps the baby sister did it on purpose!) It did not appear to hurt much when it was pulled out. Actually, when I pulled it out accidentally at therapy, Astrid spent the time that we were frantically searching for a syringe (to help put it back in) rolling around on the floor smiling and happy, but making something of a mess because I 'd just fed her. (Yuck!) Changing or replacing the button isn't hard at all, though it does take some getting used to the idea of doing it.

In short, the tube has really been great for Astrid, and all of our concerns and worries and fears about having it done turned out to be unfounded.