My crazy NJ month

So, about a month and a half ago, I passed out, and my NJ tube got caught on something and was pulled out of my intestine. We spent five days trying to push it back in, and it just Would. Not. Descend.

So I had to go to radiology to get it ‘fixed’. They couldn’t fit the wire in because it was too old of a tube, so they had to guide it without a wire. That didn’t work, of course, we had been doing that for five days! So I had to pull the tube all the way out, and they had me choose a new one. There was what I already had, and one other that didn’t have a medicine port (one of the banes of my existence), and it was ten cm. longer. So I chose that one. And let me mention that I was coming down with the flu that day, and I had a low grade fever, so my decision making might not have been the best. But anyway, this tube was PVC and super stiff. They guided it right into my intestine, which has never happened before!

The new tube worked great. (except for the fact that it was very uncomfortable)  But nine days after placement, the connector at the end popped off. We spent multiple days trying to find a replacement part to no avail. They literally do not fix nasal tubes.  So I pulled it out.

Before replacing it, we decided to research and find the best tube possible. We did. It is absolutely awesome. I have the CORFLO ULTRA Lite NG with ENFit 8 FR. 43 Inch Length 3G wt w/ Stylet. The part number is 40-7438. Getting ahold of this tube was a time consuming pain. First we asked my home health company to supply it. They said I needed a prescription so we wrote a prescription and got my doctor to sign it. They sent it to my home health company. My home health company had to order it. And… of course they sent the wrong tube. They sent the non enfit tube. I really didn’t like it. Home health informed us they can not get ahold of the tube requested. So my dad ordered it from vitality medical. They only sell TEN packs, so he ordered a ten pack. Unfortunately, we needed a prescription to buy it online as well. The prescription had to be changed, though, because we were ordering ten tubes. So the prescription had to be signed again. Then we waited for the tubes to come.

The day after they came, we went to radiology to get it put in under fluoroscopy. They absolutely could not get it into my intestine (because of my gastroparesis, nothing passes through my stomach without a fight), so they gave it some slack and asked me to come back the next day. The next day, it was still in my stomach (of course). They reinserted the wire and pushed it around a bunch. It finally went in, which was an unexpected surprise!

Later that SAME DAY, I went swimming. I dove into the pool (which I do all the time), and my goggles broke. They caught my tube and it got pulled about 5-8 cm. I didn’t get too worried, I thought it would definitely still be post pyloric, even if it wasn’t as far down. I pushed it back in and crossed my fingers.

When I got home and started using it, I started to get really full and nauseous, so I checked the placement by pulling some of the contents out of the tube and seeing what they were. I also did a whoosh test and a few very large water flushes. I concluded that it wasn’t fully where it needed to be, but that it was still post pyloric, just back flowing into my stomach a bit. I pushed it in another ten cm to help it get back down to my jejunum.

Now, after some research, I don’t think that was the best choice. If you have a tube in your duodenum, and you push on it, it hits a tight bend in the intestine. If you push it into this bend, the tube loops back around and goes into your stomach. I think this is what happened, but I can’t be sure. I now think the tube is fully in my stomach. So I am currently running tube feeds incredibly slowly into my it.

In normal circumstances, we would now go get it replaced AGAIN. But I am going to get antroduodenal manometry in less than a month, which entails pulling the tube out. It simply isn’t seeming worth the radiation/ anesthesia to have it only be used for 2-3 weeks.

And that brings you to where I am now. Crossing my fingers that it will descend into my intestine on its own (which it probably won’t, because it has never done that in the past.) Ug, it’s been a frustrating month!

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