G-tube

I’m new to this app, I’m hoping to meet people who have similar illnesses and struggles, it’s hard finding anyone who can really understand what it’s like. Adding all my hashtags hoping that I’ll meet people going through the same things I am!if anyone wants to chat shoot me a message :) #ChronicIlless #Gastroparesis #PulmonaryArterialHypertension #PulmonaryHypertension #HeartTransplant #LungTransplant #heartfailure #MastCellActivationDisorder #EhlersDanlosSyndrome #HickmanLine #FeedingTube #Gtube #PrimaryImmunodeficiency

Hey Mighties! I’m coming back. Happy 2023! I have some news to share about how my 2022 ended and how 2023 is my year of taking better care of myself. Stay tuned for a published story on life after life support. Are there any Mighties who live with a G-tube or Peg for feeding? #CheckInWithMe #MightyTogether #ChronicIllness #FeedingTube #Gtube #Dysphasia

I’m single

Hi, I’m new here. I’m the full time caregiver for my five year old daughter who has spastic quadriplegic cerebral palsy. I live with her, my husband who works from home and our oldest daughter who is 8 and now is homeschooled due to Covid-19.
We have been very strictly quarantined since March 9. When my daughter gets even a cold she needs hospital care so we’ve been home and haven’t interacted in person with people this whole time. Up until about 7 weeks ago one of us would grocery shop, but now we use curbside pickup.
We turned down the opportunity to have in home nursing care in July/august to be safe. I regretted that decision as the school year started and I attempted to homeschool both of my children ages 8 & 6.
We have the opportunity again and I still can’t give a solid yes even with an exposure assessment, the promise of n95 masks etc etc
I’m scared but I also desperately need help and we will be locked down for a very long time to come. Is it time for me to accept the help or should I keep us locked down?
I want to hear if others have let caregivers into their home, your experiences with that and just generally any opinions and reasoning on what you would do in my position. There are a lot more details to share for context but this post is already so long.

Thank you for sharing your stories with me here.
#CerebralPalsy #HypoxicIschemicEncephalopathy #Gtube #MedicallyFragile #MedicallyComplex #MedicallyComplexChild #SpecialNeedsParent #ParentsOfChildrenWithSpecialNeeds #GettingHelp #HIE

So tired of living in such pain all the time, i know my mighty friends understand! Spent the day at the ER because my G tube literally fell out in the midst of a bout of violent vomiting... I have a g tube for venting my stomach to decrease the vomiting but stopped working Friday night, low and behold, because it was no longer in proper place! Well, on the bright side at least he got it back in but not before sending my pain through the roof. He had to apply a ton of pressure and even with decreasing size felt like he was trying to put a blunt screw through to my spine via my already chronically painful abdomen. Not to mention how sore i am from all the vomiting that's been going on for days... Lidocaine did little to help and apparently the fascia had already started closing so he was literally stuffing the blunt tube in, tearing through the fascia. Home now but dealing with the aftermath and know I'm not getting any sleep tonight... Would love some distraction please? Or advice on what my fellow spoonies do to deal with extreme painful nights, especially abdominal pain? TIA #Upallnight #ChronicPain #abdominalpain #FeedingTube #Gtube #Gastroparesis #nausea #Vomiting #Dysautonomia #Dysautonomiastruggles #HypermobileTypeEDS #ChronicIllness #NeverGiveUp

I was wondering if anyone knew what they plastic “buttons” were for next to my GJ Tube? My doctor never told me and I don’t see him for a few weeks so if anyone could help that would be great. Thank you!
#GJtube #GIDisorder #FeedingTube #Gtube #Jtube #Stomach #stomachpain #ChronicIllness #ChronicPain #EnteralFeedings #Surgery #GI #help