@406_haley: Everyone meet Frankie😅 A week ago too my new site became infected so I was in the ER for that. Thankfully after IV antibiotics it’s looking and feeling a lot better around the incision site ##fypシ゚viral##trending##fyp##ehlersdanlossyndrome##gastroparesis

Anna :

It amazes me how complicated your tube set up is. I’d be pissed honestly

madyson🧃🍞 :

ugh i’m sorry you’re dealing with that monstrosity, haley 😭

kenz! :

girllll I’m overwhelmed for you 😭

Leesha :

The CORFLO PEG is great as just a G for draining, but with the J extension, it’s a nightmare. 😭

grace elizabeth :

No advice but I had one of the diy GJs when I first got it placed and it was awful. My intestines kinked the J (the Nj) portion and when my nurse tried to unclog it it ruptured inside me 🫠

Julia.Mac :

Girl I have that same thing!! It is so unconventional!

Lindsay Murray :

I’m getting so close to needing a recite of my tube bc my stomach contents are starting to leak out of my stoma, the joys of having feeding tubes so frustrating!!! Sending spoons! Xxx

Ashley Messina :

Are you still doing TPN in your central line

ellies.healing :

I still cannot fathom this

joey :

i have 2 belly buttons from a feeding tube

Róisín Hissong 🍉 :

OML. This almost exactly what they did last year for me instead of an NJ they used a central line through a very old kind of dangler……..literally watched that doc make it in the IR OR, showing me on the table the entire time. It sucked and we had to MacGyver it just to use it but got me discharged finally after 10 months admitted. My team and I are trying to acquire back up tubes just in case. My last AMT lasted a year, shocking. Balloon finally broke😳 got it exchanged this Monday, before that it was almost daily. Was getting intubated and tube exchange 3-5 times a week. I hope they get you a better tube soon and your new site heals.

s :

no hate whatsoever, have never heard anyone say etc. out loud like that😭😭💜

TheHannahBarron :

Happy you got something that’s working!! [Heartwarming] Crazy set up!!

Shanna_The.NailBoss :

Been following your journey for years. You look amazing 🫰🏼💚

Charcharbings :

NotÜrCupÖfBatShitCrazy :

Omg girl, I have a bearded dragon that I named Frankie I have him for over 2 years ago, and reason I named him Frankie is probably EXACLY the same as yours 🥴🤣

its just me :

You all, with these difficulties are amazing. I am in Awe of you. You are doing great bringing this to us, public who have no idea what you deal with every day.

Nate :

Are you actually getting your belly button pierced? 😂

Lexi📖 Cozy Book Nook🤍✨📚 :

Girl this sucks but I'm so beyond proud of you with everything you've been through 🧡

Dawn :

Janae Borschel :

oh I would be so upset if they placed that for me. I am so sorry u have to go through that

bayleeboo222 :

Unfortunately the new connections and tubes is so stupid. They should have never discontinued the other tube that actually was a true GJ

lane_1221 :

Hey Frankie but also I’ve got no advice 😳

@patient_to_provider :

This sounds frustrating as hell I’m so sorry

Candice :

I have no suggestions, I had a tube similar and it SUCKED! I couldn’t even drain the G