Basically, it is just a plastic tube that has been inserted into the upper part of my stomach. It has a clamp and I can use it to drink water, take medicine, and eat liquid food, kind of like juice boxes of Ensure. If I am not able to eat at all by mouth, then I should be taking in at least 4 feedings a day plus added water. Currently, I am eating totally normally by mouth, but I am still using the tube multiple times a day for water and sometimes medicine. I don't want it to get clogged or backed up so I make sure it is used a lot.
At the risk of sharing too much information, this is what it looks like:
|This was one random day when I got dressed up and wanted to feel normal - my wig is hilarious - but you can see that stupid tube sticks out horribly and I don't like putting too much tape on my skin|
|my juice boxes of "food"|
|what my bathroom cabinet currently looks like - food, tubes, sterile bandages, it is super classy my life right now...|
|the syringe we use when we manually do water or medicine in the tube|
|my IV pole and one of the gravity bags after a feeding|
|in a strange twist, Violet thinks this is the coolest thing in the world - Dr. Hopper helps clean the tube, use the syringe, and basically wants to be a part of all the tube fun - it is cute - Jeremy has stayed far away so far, and that is okay too|
|my view when the food is being pumped in - I just sit back and relax while it goes in - it takes about 45 minutes to do a full feeding, but only 5 minutes when we just to water|
I cannot take a bath and when I shower, I have to tape a plastic bag over the tube so that the site does not get wet. By the way, showering in general right now is just super strange. I am always a little off balance and shaky, so that is fun, but I also have no hair and have a plastic bag taped to my stomach. I am just really ready for all this crap to be over, but I know I am still at the beginning of this process. Ugh.
Overall, I hate the tube and the fact that I had to get it early and how I am aware of it all the time - when I sleep, move, walk, cough, laugh, whatever. But, I am grateful that I know dehydration will no longer be an issue for me - no matter what. That was scary, so even if I go totally crazy, Brian or my mom or someone could still feed and water me and I could still get the chemo or whatever moving through my system. And that is the ultimate goal, so I put up with this painful and gross huge plastic thing hanging off my body and try to make the most of it. Really it is not that bad, and it gets more manageable every day. I can do this. I can do this.