1. < Digestive Health

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

Posted by minajo @minajo, Aug 29 7:49am

Nonverbal, 48 yr daughter hospitalized with sigmoid volvolus yesterday, a decompression procedure done, now surgeons want to do resection..
She is having behaviors in hospital but told 90% chance if volvolus returning if i refuse surgery
She cannot live with colostomy but drs think anastomosis can be done hopefully
She's getting Versed,Ativan,Morphine,has pulled 3 ivs,rectal tube out..
If i refuse her surgery,im conservator,might perforate,needs emergency surgery and might not make it
I need to make decision for her today!!!!
PLEASE ADVISE
Will need 24/7 care, 1:1 aide at skilled nursing,

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shelleyW | @shelleyw | Aug 30 6:43pm
In reply to @minajo "My gratitude for your support It was a sigmoid volvolus needing decompression We're not consenting to..." + (show)
@minajo

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....

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Minajo, thank you for sharing this. I am so glad (wrong word for this, but can't think of any other) you have relief from the stress of the decision making process, for now. The popsicle smile 😃 was precious, YOU needed her smile, I want to think it was her way of saying I'm ok mom and I love you 💕. So, she is in the hospital full time right now? Will that be for awhile or permanent? I am so glad you have aids. Yes, she needs you and you need her, after all you are mom and daughter. You need and want each other's never ending LOVE 💕 💕💕.
I'm sitting here crying with, for, because of your beautiful love for her. I can't see the keyboard, more later. 🫂🫂🫂 ShelleyW

REPLY
pml | @pml | Aug 30 8:16pm

Pray to God for help in your decision. Put everything in God's hands. He will be there to direct you as to the best way to proceed. He knows of all your needs and your daughter's needs. It states that in the Book of Matthew. Also pray for your daughter. She must be terribly scared with all of this happening to her. Just talk to God like he is your best friend and he is. Ask him for help in this very stressful time for you and your daughter. Then, have faith and relax and expect a miracle!
I will be praying for both of you too!
PML

REPLY
1 reply
shelleyW | @shelleyw | Aug 30 9:14pm
In reply to @pml "Pray to God for help in your decision. Put everything in God's hands. He will be..." + (show)
@pml

Pray to God for help in your decision. Put everything in God's hands. He will be there to direct you as to the best way to proceed. He knows of all your needs and your daughter's needs. It states that in the Book of Matthew. Also pray for your daughter. She must be terribly scared with all of this happening to her. Just talk to God like he is your best friend and he is. Ask him for help in this very stressful time for you and your daughter. Then, have faith and relax and expect a miracle!
I will be praying for both of you too!
PML

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pml
I really liked your heartfelt message. Your strength in your beliefs is obvious and powerfully positive.
I was raised with these beliefs, but I lost them years ago.
Your message made me miss them. I am sure your message touched many readers.

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1 reply
pml | @pml | Aug 30 9:28pm
In reply to @shelleyw "pml I really liked your heartfelt message. Your strength in your beliefs is obvious and powerfully..." + (show)
@shelleyw

pml
I really liked your heartfelt message. Your strength in your beliefs is obvious and powerfully positive.
I was raised with these beliefs, but I lost them years ago.
Your message made me miss them. I am sure your message touched many readers.

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Shelley,
Thank you so much! I do have strength in my beliefs but it's not because I am a superior religious person. I am very religious but much of the time in my life when things were hard; i.e. no money and no food in the house, all we had left was prayer and belief in God. Believe me if we had had any money, we'd probably be out buying food instead of praying to God! But all we had left was our prayers and they always were answered.
You didn't lose your beliefs, you just misplaced them. Start by praying daily. God loves to have people talk to him. Not many people do these days. I think he gets lonely. Just talk to God like he's your best friend and he is. Also start reading the Bible daily. Just a few passages in the morning before you get up or at night before you go to bed. Read the old fashioned King James Bible. It's the original and also the only one they haven't tried to re-write. It's the Bible that when it was translated from Hebrew to English it was done on an island and God intervened so that the people translating it did so truthfully and they all had the same translation. When you do start reading the Bible you will come across the word "Kine". It means cows. I looked it up in a very old dictionary that I have.
God bless you! I wish you the best.
PML

REPLY
1 reply
minajo | @minajo | Aug 30 11:00pm
In reply to @hopeful33250 "@minajo I have read through your posts, and I admire all of the thought and concern..." + (show)
@hopeful33250

@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?

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YES!!! ALL OF YOU MY NEW FRIENDS!!

REPLY
shelleyW | @shelleyw | Aug 31 2:22am
In reply to @pml "Shelley, Thank you so much! I do have strength in my beliefs but it's not because..." + (show)
@pml

Shelley,
Thank you so much! I do have strength in my beliefs but it's not because I am a superior religious person. I am very religious but much of the time in my life when things were hard; i.e. no money and no food in the house, all we had left was prayer and belief in God. Believe me if we had had any money, we'd probably be out buying food instead of praying to God! But all we had left was our prayers and they always were answered.
You didn't lose your beliefs, you just misplaced them. Start by praying daily. God loves to have people talk to him. Not many people do these days. I think he gets lonely. Just talk to God like he's your best friend and he is. Also start reading the Bible daily. Just a few passages in the morning before you get up or at night before you go to bed. Read the old fashioned King James Bible. It's the original and also the only one they haven't tried to re-write. It's the Bible that when it was translated from Hebrew to English it was done on an island and God intervened so that the people translating it did so truthfully and they all had the same translation. When you do start reading the Bible you will come across the word "Kine". It means cows. I looked it up in a very old dictionary that I have.
God bless you! I wish you the best.
PML

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pml, your reply was very sensitive and kind. Laugh for the day... I do talk to God usually several times a day... but... I ususally begging him to make it all stop. Then there are days when I am blaming him for the 2 recreational accidents, ocean and snow literally killed the real me... I tell him "if you didn't want me to continue being an active, kind person enjoying helping others, why didn't you just let me die, Mother Nature is who yanked my life away and left me in chronic suffering and you/he is Mother Nature. 😱🙏😡 ShelleyW

REPLY
1 reply
minajo | @minajo | Aug 31 10:56am
In reply to @hopeful33250 "@minajo I have read through your posts, and I admire all of the thought and concern..." + (show)
@hopeful33250

@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?

Jump to this post

YES!! I am so grateful for all the suggestions, "hugs" 🤗My daughter still hospitalized and by lack of communication was given two clear liquid trays yesterday an hour apart and i left for an hour and when i came back ahe had projectile vomiting for 2 hours, no iv as with profound autism has pulled out 3
She was doing excellent day before on clear liquids and after the decompression procedure imagine how upset i was holding towels under her and worrying about damage to abdomen😢
Xray done and showed much improvement after decompression, volvolus resolved, some stool in transverse colon, now having soft bm's.. she needs to progress to soft, then regular foods, so she'll be in hospital for that
And she had a blessing
from a priest last night, may a miracle come to her we hope 🙏

REPLY
3 replies
shelleyW | @shelleyw | Aug 31 1:33pm
In reply to @minajo "YES!! I am so grateful for all the suggestions, "hugs" 🤗My daughter still hospitalized and by..." + (show)
@minajo

YES!! I am so grateful for all the suggestions, "hugs" 🤗My daughter still hospitalized and by lack of communication was given two clear liquid trays yesterday an hour apart and i left for an hour and when i came back ahe had projectile vomiting for 2 hours, no iv as with profound autism has pulled out 3
She was doing excellent day before on clear liquids and after the decompression procedure imagine how upset i was holding towels under her and worrying about damage to abdomen😢
Xray done and showed much improvement after decompression, volvolus resolved, some stool in transverse colon, now having soft bm's.. she needs to progress to soft, then regular foods, so she'll be in hospital for that
And she had a blessing
from a priest last night, may a miracle come to her we hope 🙏

Jump to this post

Minajo,
Gosh, that sounds awful. Was her horrible vomiting caused by her taking in two trays of liquid, too fast? Or did something else happen with the miscommunication?
🥺❤️‍🩹🙏🫂🫂🫂🫂I know it's just the idea, cuz I know all of want to help and can't, but consider this a group hug from the many many many members who have read your posts. ShelleyW

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 31 2:55pm
In reply to @minajo "YES!! I am so grateful for all the suggestions, "hugs" 🤗My daughter still hospitalized and by..." + (show)
@minajo

YES!! I am so grateful for all the suggestions, "hugs" 🤗My daughter still hospitalized and by lack of communication was given two clear liquid trays yesterday an hour apart and i left for an hour and when i came back ahe had projectile vomiting for 2 hours, no iv as with profound autism has pulled out 3
She was doing excellent day before on clear liquids and after the decompression procedure imagine how upset i was holding towels under her and worrying about damage to abdomen😢
Xray done and showed much improvement after decompression, volvolus resolved, some stool in transverse colon, now having soft bm's.. she needs to progress to soft, then regular foods, so she'll be in hospital for that
And she had a blessing
from a priest last night, may a miracle come to her we hope 🙏

Jump to this post

@minajo

I'm so pleased to read your report of your daughter's improvement at the last X-ray. Wishing her all the best as she regains her ability to eat and digest food. I hope you are able to take care of yourself during this time.

Looking forward to hearing from you again!

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 31 5:18pm
In reply to @minajo "YES!! I am so grateful for all the suggestions, "hugs" 🤗My daughter still hospitalized and by..." + (show)
@minajo

YES!! I am so grateful for all the suggestions, "hugs" 🤗My daughter still hospitalized and by lack of communication was given two clear liquid trays yesterday an hour apart and i left for an hour and when i came back ahe had projectile vomiting for 2 hours, no iv as with profound autism has pulled out 3
She was doing excellent day before on clear liquids and after the decompression procedure imagine how upset i was holding towels under her and worrying about damage to abdomen😢
Xray done and showed much improvement after decompression, volvolus resolved, some stool in transverse colon, now having soft bm's.. she needs to progress to soft, then regular foods, so she'll be in hospital for that
And she had a blessing
from a priest last night, may a miracle come to her we hope 🙏

Jump to this post

@minajo I have to commend you for all the work you are doing for your daughter. Though, work is really the wrong word. Has your daughter always lived at home with you? As someone who worked in a hospital (I was a nurse), I really think a care management meeting would be best for your daughter. A care-management team would include: you, 1 or two nurses, the discharge planners, social workers, hospital chaplain (if you wish), and maybe the doctor. These meetings were always very successful for the family. You will have a definite say in the discussions. What is 1 solution that you would like to come out of this meeting?

REPLY
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