← Return to Urgent help.. Sigmoid Volvolus, disabled adult daughter (autism)

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@shelleyw

Minajo,
I am hearing such deep despair and devotion from your words. You have probably already done what had to be done, by the time you read this. My heart breaks for you, your daughter and this impossibly important situation you are facing.
My 2 cents: since your daughter is yanking out tubes, I guess that she is overwhelmed and scared too. Why can't they give her STRONGER meds, to keep help her be more sedated, for now. Yanking tube and IVs out, hurts her, in every sense. Tape and re-tape her tubes. Can't they find another location on her body that is too hard to get to, especially if she is more sedated.

I found this link to the MAYO CLINIC:
https://www.mayoclinic.org/diseases-conditions/intestinal-obstruction/symptoms-causes/syc-20351460
Surgery- do you mean a decompression sigmoidoscopy or the colostomy?
Get an advocate for both of you. You need support and help to explain why you should decide what to do. I wish I had a phone number to give you but, damn it, get patient/social services/the damn doctors to explain this stuff to you.
All of us will have you both in our prayers. 🙏🩵🙏🩵
ShelleyW

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Replies to "Minajo, I am hearing such deep despair and devotion from your words. You have probably already..."

My gratitude for your support
It was a sigmoid volvolus needing decompression
We're not consenting to any further surgery yet as her quality if life would be so affected with colostomy
She'd be in a awful long-term facility needin restraints to keep from pulling bag off
No day program anymore, she'll regress
to a vegitative status
We have support in CA from regional center for DD population
Had meeting yesterday
She has UTI now but with diapers, some stools few days ago no surprise
She's very groggy but not needing sedation
She's on clear liquids as no IV
She was so happy to see a Popsicle yesterday!!!
Many thanks to all for suggestions, prayers
We do have 24)7 aides as her autism, epilepsy requires it but i go to hospital from 9-11 pm
She needs me....