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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minajo | @minajo | Sep 24 6:49pm

Hello again... So Lisa is about 2 1/2 weeks out of hospital after vulvolus repair and decompression.. she has had really difficult time adjusting mainly from her autism, trauma in hospital and is having " accidents", doesn't wish to go to br when asked, has 3 staff helping but she gets very aggressive etc
Having bms about every other day..
Not much progress with P T. trying to get her walking more..
As i looked over 198 pages 😳of hospital records i saw a " possible undiagnosed Hirsch sprungs disease, very uncommon in adults, then i saw connection with epilepsy ( which also was diagnosed at 32) and remember asking a dr in hospital if a trip to trauma center a few weeks before her admission for volvulus, for status epilepticus , 9 minutes seizure, then another in ambulance, a first for her, could be connected, he said yes . Something about intestinal nerves..
So more to digest ..
Im also on epilepsy support group having asked about Zonisamide which she took and seemed to cause 24# weight gain! Constipation? Causing impaction? Dr said no 😔Now on lamictal but do wonder if she's actually epileptic after all? Or her intestinal issue was triggering seizures?
Oh my shes complicated but has had so much over 48 years
Just seems more than ahe and i can bear anymore🥺
Care home wants to move her,after 15 years,only home she's ever known outside mine..my husband and i can't deal, he's 81, I'm 76
Really you'd think California so progressive in caring for disabled,not so .
So i need to post this to epilepsy group too how do i do that? . Thanks to all!!!

REPLY
2 replies
shelleyW | @shelleyw | Sep 24 11:04pm
In reply to @minajo "Hello again... So Lisa is about 2 1/2 weeks out of hospital after vulvolus repair and..." + (show)
@minajo

Hello again... So Lisa is about 2 1/2 weeks out of hospital after vulvolus repair and decompression.. she has had really difficult time adjusting mainly from her autism, trauma in hospital and is having " accidents", doesn't wish to go to br when asked, has 3 staff helping but she gets very aggressive etc
Having bms about every other day..
Not much progress with P T. trying to get her walking more..
As i looked over 198 pages 😳of hospital records i saw a " possible undiagnosed Hirsch sprungs disease, very uncommon in adults, then i saw connection with epilepsy ( which also was diagnosed at 32) and remember asking a dr in hospital if a trip to trauma center a few weeks before her admission for volvulus, for status epilepticus , 9 minutes seizure, then another in ambulance, a first for her, could be connected, he said yes . Something about intestinal nerves..
So more to digest ..
Im also on epilepsy support group having asked about Zonisamide which she took and seemed to cause 24# weight gain! Constipation? Causing impaction? Dr said no 😔Now on lamictal but do wonder if she's actually epileptic after all? Or her intestinal issue was triggering seizures?
Oh my shes complicated but has had so much over 48 years
Just seems more than ahe and i can bear anymore🥺
Care home wants to move her,after 15 years,only home she's ever known outside mine..my husband and i can't deal, he's 81, I'm 76
Really you'd think California so progressive in caring for disabled,not so .
So i need to post this to epilepsy group too how do i do that? . Thanks to all!!!

Jump to this post

Minajo,
You really sound overwhelmed and Lisa too.
Why does the care home want to move Lisa?

REPLY
shelleyW | @shelleyw | Sep 24 11:11pm
In reply to @minajo "Hello again... So Lisa is about 2 1/2 weeks out of hospital after vulvolus repair and..." + (show)
@minajo

Hello again... So Lisa is about 2 1/2 weeks out of hospital after vulvolus repair and decompression.. she has had really difficult time adjusting mainly from her autism, trauma in hospital and is having " accidents", doesn't wish to go to br when asked, has 3 staff helping but she gets very aggressive etc
Having bms about every other day..
Not much progress with P T. trying to get her walking more..
As i looked over 198 pages 😳of hospital records i saw a " possible undiagnosed Hirsch sprungs disease, very uncommon in adults, then i saw connection with epilepsy ( which also was diagnosed at 32) and remember asking a dr in hospital if a trip to trauma center a few weeks before her admission for volvulus, for status epilepticus , 9 minutes seizure, then another in ambulance, a first for her, could be connected, he said yes . Something about intestinal nerves..
So more to digest ..
Im also on epilepsy support group having asked about Zonisamide which she took and seemed to cause 24# weight gain! Constipation? Causing impaction? Dr said no 😔Now on lamictal but do wonder if she's actually epileptic after all? Or her intestinal issue was triggering seizures?
Oh my shes complicated but has had so much over 48 years
Just seems more than ahe and i can bear anymore🥺
Care home wants to move her,after 15 years,only home she's ever known outside mine..my husband and i can't deal, he's 81, I'm 76
Really you'd think California so progressive in caring for disabled,not so .
So i need to post this to epilepsy group too how do i do that? . Thanks to all!!!

Jump to this post

Minajo, I hit the send button too soon.
Is Lisa's pain able to be controlled? You mentioned this as big concern for you.
When you say Lisa is getting more aggressive, is this a new problem? Does she express her aggressiveness at you or other people? Does she hurt herself during the aggression?
Goes I wish there was a magic pill to give you all the energy you need; and a magic pill that would give Lisa some relief so she could rest. Always thinking of you both. ShelleyW

REPLY
minajo | @minajo | Oct 20 8:15am

Again my autistic nonverbal daughter back in hospital six weeks later, same, volvulus, confirmed on ct, decompression done yesterday,
Now resection needed or it will reoccur, and cause her severe pain
But she can't do ng tube, large quantity of liquid prep, started magnesium sulfate
I am petrifed of colostomy as she cant take care of herself but surgeon confident a anastomosis will work?
But she needs clean colon, how?
On clear liquids restrained so ahe won't pull rectal tube, ivs,
I am a desperate mom, am i doing right thing? But if no sugery, im putting her in pain
PLEASE ADVISE, SUPPORT
IM
Sincerely maureen

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 20 4:07pm
In reply to @minajo "Again my autistic nonverbal daughter back in hospital six weeks later, same, volvulus, confirmed on ct,..." + (show)
@minajo

Again my autistic nonverbal daughter back in hospital six weeks later, same, volvulus, confirmed on ct, decompression done yesterday,
Now resection needed or it will reoccur, and cause her severe pain
But she can't do ng tube, large quantity of liquid prep, started magnesium sulfate
I am petrifed of colostomy as she cant take care of herself but surgeon confident a anastomosis will work?
But she needs clean colon, how?
On clear liquids restrained so ahe won't pull rectal tube, ivs,
I am a desperate mom, am i doing right thing? But if no sugery, im putting her in pain
PLEASE ADVISE, SUPPORT
IM
Sincerely maureen

Jump to this post

@minajo Oh Maureen, I am so sorry that you and Lisa are having to deal with this again so soon. She must be so upset to be back in the hospital.

I think that in many cases of anastomosis of the colon, two ends can be rejoined to bypass the bad section without requiring a colostomy. That sounds like what her doctor is suggesting too.

I think her fear is probably the most difficult for you, so anything that will prevent future hospitalizations is the right and best thing for you to do. I assume that her pain is very difficult for her to understand, leading to even more anxiety on her part, so whatever you can do to relieve it is the right move.

Is there anything the hospital can safely give her to ease her anxiety?

REPLY
shelleyW | @shelleyw | Oct 20 8:01pm
In reply to @minajo "Again my autistic nonverbal daughter back in hospital six weeks later, same, volvulus, confirmed on ct,..." + (show)
@minajo

Again my autistic nonverbal daughter back in hospital six weeks later, same, volvulus, confirmed on ct, decompression done yesterday,
Now resection needed or it will reoccur, and cause her severe pain
But she can't do ng tube, large quantity of liquid prep, started magnesium sulfate
I am petrifed of colostomy as she cant take care of herself but surgeon confident a anastomosis will work?
But she needs clean colon, how?
On clear liquids restrained so ahe won't pull rectal tube, ivs,
I am a desperate mom, am i doing right thing? But if no sugery, im putting her in pain
PLEASE ADVISE, SUPPORT
IM
Sincerely maureen

Jump to this post

Maureen,
I answered your private message. How are you doing today? I didn't hear back from you. How is Lisa doing?
All the best, Shelley

REPLY
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