The last couple days Penny has been pretty painful around the tube site. The skin around the tube was becoming raised and tender, and any movement was painful. The visiting nurse on Monday agreed with us that something was wrong, and we were scheduled for an appointment with interventional radiology on Wednesday.
Then around 1am Penny got up to use the bathroom and the balloon that is supposed to anchor the GJ tube to the inside of her stomach popped out and the contents of her stomach came out with it. After trying to figure out a way to drive her to the hospital while dealing with the leaking, we ended up getting an ambulance ride to the ER where we spent the night waiting for an appointment with interventional radiology.
We've just returned to the ER with (yet another) new tube. But things are a bit different this time. The tube apparatus is the same, but the the balloon is intentionally not tight to the stomach. It appears that we are dealing with at least two issues -- a balloon that partially deflates and difficulty in healing around the tube channel. It's a bit of a catch 22 -- when the tube isn't working well, it is hard to get good nutrition. And without good nutrition, it is hard to heal well. We will likely be consulting with nutrition and a wound care nurse to help
The plan is to try to let the channel the tube is in heal up for a few weeks before using the balloon as it is intended. The tube will be anchored externally, but this means we'll be dealing with more leaking and dressing changes, and experimenting with food intake and tube feedings for a while to see what is least problematic. We'll see how this goes and reevaluate the situation. There are some other options, but they all seem on balance worse, if we can get this to work.
Penny is going to be admitted for observation, more electrolyte infusions, and monitoring of her white blood cell counts (which are still high). If all goes well, we hope to return home tomorrow. That will depend on the results of blood work and an assessment of how difficult it is to deal with the new GJ tube situation. The good news is that pain of the last few days is gone, so Penny should be much more comfortable while we wait.