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

@minajo

Your in very tough situation, does the hospital have a social worker you can talk with?

Yes, but ultimately decision mine
We have regional center help but they can't make decisions like this
Thanks

@minajo I echo what others have said, this is a difficult position to be in.

Is your daughter normally at home w you, or in a facility? Will a skilled nursing facility be able and willing to take her in? Have you been able to track one down, even now before surgery? Being nonverbal, I figure you have an idea of how she may be feeling at any given time. Is there anything she has experienced close to this new challenge?

You are in a situation most parents never get to. Do you have a support system, faith community member, or close friend you can confide in? Get their thoughts and go from there.

I wish you peace in you decision. Please let us know.
Ginger

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

minajo, Shelley again... if her sigmoid is full, partial or complete blockage with poop, have they tried, probably under stronger sedation, to do a digital removal? OMG, it hurts, I have had to do 3 on myself.
Can they decompress from the sigmoid and through a nasal gastric tube, too? The nasal tube HURTS LIKE HELL going in, I had one, I should've have been at least somewhat sedated, cuz even I had a difficult time keeping still while it was being inserted. Once in, it is not painful, but it is uncomfortable. Your daughter would probably yank it out.
Don't hesitate for a second in pleading your case with everyone, YOUR VOICE can be one of the greatest powers you have over the doctors, so USE IT.
Anyone reading this, is there a reason why the daughter can't be very sedated?
Let us know how you both doing.
Shelley

Ginger (volunteer), isn't there something, someone at Mayo that you can use your power and influence to get to help her?
ShelleyW

Oh thank you and all for trying to help
Surgeon just said a resection would be a " miracle" surgery, might have colostomy bag and with autism, yanking out ivs would pull off colostomy bag
But too could perforate, she could die
Lord help me make right decision for my daughter..

@minajo I’m so sorry to read this and by now you’ve probably made a decision.

Whatever you decided - you have done the best thing ♥️

Caught between 2 potentially undesirable outcomes - whatever you choose to do.

You can only listen to the best advice from the medical team and explanations while also providing your own input of your knowledge of your daughter - and then listen to your heart which way to go 🙏

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....

@minajo
I have read through your posts, and I admire all of the thought and concern that you have put into this decision. It certainly is not easy!

You have sought the help and advice of professionals and are making best choice with what you know about your daughter and her health needs.

Will you continue to post and let us know how she is doing?