RANT: Started using the new ENFit feeding tube bags and accessories. ENFit was an industry-wide change to "fix" a problem that didn't exist. I put it off as long as I could. Feeding tubes have been around since the 1800s, pretty much unchanged. There wasn't a problem "mixing up" feeding tubes with intravenous IVs. They could have colored coded the existing setup.

I shouldn't have to have to use a wrench to use my feeding tube or its accessories, like medication syringes. I shouldn't have to use an ENfit cleaning kit because stomach contents (puke) now reside in the connections after using them because you can't flush the cavity. #Medical #MedMastodon #enshittification #Enteral #Nursing #FeedingTube

I shouldn't have to spend a hundred dollars to buy various adapters to use my stocked up medical supplies or spend thousands to buy new ENFit supplies. Of course, nothing is being produced "generically" now. It's all proprietary and shared by the few large mega-medical supply manufacturers through a trade organization they formed just for enteral (feeding tubes) care called the Global Engineered Device Supplier Association

After 14 years with my feeding tube, ENfit has now taken away my #accessibility to use my feeding tube and self-administer some of my medical care.

The ENFit transition is a global patient safety initiative to standardize enteral feeding tube connectors, replacing old "legacy" connectors with a new, twisting design to prevent misconnections with IV lines.

https://stayconnected.org/enfit/

This morning, I got a new #midline. I avoided to have a peripheric catheter that usually stuck within a day. Happy point.

Worst part : they decided to go trough #enteral #feeding. Even with the failure of yesterday.
The test finished with me puking 3h after the begging of the #nutrition (which was supposed to stay 24h).

Right after that, I wheeled to the doc office. 15 minutes later, they were saying that : "okay, we will remove the feeding probe". And get you into #parenteral feeding.

They asked for a biggest #hospital a slot to setup a #picc line. Then, 1 day to test it.
After that, I should be able to go #home ✨

Let's say : Tuesday?

After that, I have a some surgery to plan. That will not be fun.

My #hospitalization is keeping awfull.
Instead going to #parenteral feeding, they decided to force and go through the #enteral feeding probe.

Conclusion : I was sick during the whole yesterday. #diarhea, #shudder, abdominal #pain.

They told me that they won't go to parenteral. And if #enteral feeding doesn't work, then they will release me without any solution.

I promise I tried my best yesterday. But I do not want to be #sick today again like that.
I'll ask the #doctor to stop. I do not care yet if I have to leave with nothing.
I will not be able to use this solution daily based. Like : Never.

That will be a hard talk for sure. I'll argue I was a good patient, tried 5 times, got #sick / #puke 5 times. They will tell me to do one last test with nutrition. And I'll camp on my position and say no. I prefer leaving with no solution than with one who makes me sick. They will tell me they don't have anything else to propose. And I will say : "ok, but what you propose makes me sick". So I won't go again one last time on it.
If you can't propose something here, then ask for my transfer to beaujon (another #hospital).

I'm #mad and #sad about this situation. I went to LM (this hospital) because I wanna a feeding probe. And now, this situation is terrifying me and making me puke.

#disease #gastroparesia #heds

I'm currently under a panic attack due to my naso-deudenale feeding probe.
As it never helped me and just made me #sick a part of me just want to remove it.

It's highly irrational, as it doing it would only lead me to close doors. Like #parenteral nutrition.

I have to keep this probe "for fun" more few days.
I miss my #benzo a half bromazepam would have helped me.

#nutrition #enteral #Medical #heds

Today, the doctor decided to go through #enteral feeding via the probe. Even if all three water previous tests failed.
Of course, I let you guess what happened. I puked after 13mL of enteral solution.

The doc told me they will review the case during their tomorrow briefing. There are few possiblities :
1 - replacement of the current probe by one setup more deeper (jejunal).
2 - keeping my current #parenteral feeding line.

Both are good solutions. I think I prefer having a parenteral one as I will avoid me having #diarrhea

Let's wait tomorrow then. But what is sure is that I'll not get out tomorrow as they planned.

#heds #gastroparesia #medical