update on my mom

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worriedgirl
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Date Joined Apr 2009
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   Posted 11/19/2009 2:10 PM (GMT -7)   
im sorry i am making a new thread but there was so many replies so i figured i would start a new one. Talking with the nurse, all  her tests came back negative for infections or anything so they are no closer to figuring out why. she could have asperated into her lung(sp) but who knows. her liver is bad but it is not causing this. so they said that we should wait til monday before making a decision but come monday we will either have to take her off the plug or put a trach(sp) in. well i know mom wouldnt want to have a trach and be bed ridden and all the complications with that(there is a guy across from her with a trach and he looks miserable) so i am sure we will deny that procedure. so come monday we may be taking her off. i dont know how i am gonna go til monday but i will have no choice. when they tried to take down her sedation and the ventilator she became agitated and couldnt breath on her own which her nurse says that isnt a good sign but it isnt a darning sign either. so until then i am exhausted. my comanager at work is upset with me because of my time off and says maybe i need to take a leave of abscence but i cant afford that. come tomorrow i am going back to work but gonna switch my schedule monday so that i am not working so if they make us make a decision then we can.
 
 
oh just because im looking at worst case scenarios does the amean i have given up on my mom? my cousin yelled at me today saying that everyone thinks i have given up on my mom. well i havent i just know the possiblities. i asked my sis if that what she thinks and she says no that she just knows that i look at all t he scenarios and that she hates asking worst case scenerios because she is afraid the doctors will think that we dont want her to survive. i also had the chaplain come pray for peace and God's will to be done.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 11/19/2009 3:04 PM (GMT -7)   

I think it's good that you started a new thread, WG.  Looking at worst case scenarios is just a way to prepare oneself for what might happen...and also to find out if anything can be done in those situations to improve quality of life.  You know your mom wouldn't want to be on a trach, so now the decision must be made whether to take her off the ventilator or not.  Some people will go ahead and live for some time; others will pass away within hours.  It depends on the individual's situation.  If anyone has concerns about her NOT getting a trach, make sure they know that it needs 24-hour care.  They have to be suctioned.  They get mucus plugs, which is a life-or-death situation.  It's not as easy as just having a hole in your trachea.  Make sure they know that.  Have a nurse explain it to them.  If she is not showing any improvement and not responding, would they want her to live like that, on machines?  Would SHE want that?  These are the things that must be decided.

I hope you can work around your schedule at work; otherwise, to save your job, you may need to take Family Medical Leave.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


worriedgirl
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Date Joined Apr 2009
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   Posted 11/19/2009 7:42 PM (GMT -7)   
she had her first bm and no infections like i said but still dont know the cause. her urine to me looked really dark and we still may have to make a decision come monday but my sis is hopeful and i am still feeling its time.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 11/19/2009 9:17 PM (GMT -7)   

Ask the doctor or the nurse who is with her most (or the one you talked with previously) if her kidneys are showing signs of shutting down.  Dark urine is a clue.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


dontknowwhattodo
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 11/19/2009 11:11 PM (GMT -7)   

worried girl,

Sorry that you have to endure this pain, and make such a hard desision, I can tell you first hand about a trech..

I used to take care of an elderly gentleman who had one, and they can get plugged so easily with muscus and blood, and then that makes them almost smother if you dont get it suctioned out, it is to hard for an ill person to do this themselves... 911 was called several times because his was plugged and he couldnt breath, that is when i took it upon myself to go over there 4-5 times a day/night and suction it out, becasue he lived by himself and had no family close--- so having one of those she will have to be around someone constantly that can help her do that.. also sometimes it is very hard to just suction out, it is not a good thing.. so hopefully you dont have to go that route, but if you do you sound like a strong person and will be able to get through it.... also to let you know.. to me it does NOT sound like you are giving up on your mom, you just want what is best for her--- I am sure almost everyone one would chose not to stay alive by a machine, no quality of life.... Sometimes I think the quality is better then the quanity.... take care, thinking of you !


worriedgirl
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Date Joined Apr 2009
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   Posted 11/20/2009 5:28 AM (GMT -7)   
thanks. they are lowering her sedation again to see how she does but i dont hold my breath. i still feel this is the end for her and i am not looking forward to it
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


worriedgirl
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Date Joined Apr 2009
Total Posts : 1130
   Posted 11/20/2009 9:36 AM (GMT -7)   
Well she is now not producing alot of urine and her urine is dark. She is also swollen all over and her belly is. I asked if kidney failure and nurse says it's a concern but the doctors won't say that because the labs don't show it. They may take her off the ventilator to see how she does but if they do and she don't do well I don't want her back on. My sis is willing to leave her on til wednesday but she is in total denial about it. I don't know if they can intibate her again if I say no but my sis says yes. It's very frustrating cause she is showing minor improvements but her quality of life does not look good and I am fearing more things shutting down on her. I know she is ready and I don't want her to suffer any more
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/20/2009 9:47 AM (GMT -7)   

WG, if she has a DNR order in place and is extubated, then it cannot be put in again as that would be considered an "extraordinary measure."

I'm off to get my hair cut, but will check in later on today.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 11/20/2009 3:35 PM (GMT -7)   
I did not realise that you had started a new post. We are all here to help you through this tough time, probably your toughest yet.
Sorry, I am a little confused, why do they want to put a Trach in?Is it becuase your mums lungs were aspirated.
When my mum took her last stroke, the doctors talked to me about DNR, but never asked me to sign anything. They also said if she did not come round, that the doctors had already said that she was not a candidate for a ventilator, because it would be very difficult for her to come off the ventilator because of her other complications. We had a bad 24 hours, but she did regain Consciousness so I did not have to make any decision. so my heart goes out to you, your mind must be all over the place, I am sorry you are having to go through it, its tough waiting. I know you have not given up on your mum, you are also realistic and as I have said before there is nothing wrong with that. Its in gods hands now, so I pray he chooses the right path for her. keep us posted

worriedgirl
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Date Joined Apr 2009
Total Posts : 1130
   Posted 11/21/2009 9:12 AM (GMT -7)   
well the daily update on my mom is she is the same as she was yesterday and the day before ad the day before. they are feeding her through a tube though. her amonia on monday was 40, then went up to 57, and my sis said that it went up slightly again so im guessing 60 now. my sis still refuses to see that this is the end. but her amonia levels keep rising and i dont see it getting any better. she has been off sedation since yesterday morning which means she should have woken up by now.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/21/2009 12:55 PM (GMT -7)   

Has a decision been made to take her off the ventilator?  Does she have a Living Will?  I thought you had decided against tube feedings?  I understand that you are fighting your sister on everything.  Being on a ventilator and now having tube feedings, she could remain that way indefinitely.  If there is no significant change over the weekend, I hope you will seek legal advice next week.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


worriedgirl
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Date Joined Apr 2009
Total Posts : 1130
   Posted 11/22/2009 2:09 PM (GMT -7)   
Well they did another surgery and she survived ok. They left her belly open and put some kind of machine to take out the infection. She will need to have at least one more surgery if she recovers from this. She still hasn't woken up and it's a possibility she won't but everyone is still holding on to hope but my sis promises that if it looks like she won't recover we will take her off. She still isn't producing alot of urine and that concerns me. I still feel she won't make it.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 11/22/2009 2:48 PM (GMT -7)   

WG, what type of surgery did they do?  So there was infection, after all?

I'm glad to hear that your sister is becoming more reasonable.

It's just a matter of how much her body can take, and God's will.

Thank you for keeping us updated, when I know you are under so much stress.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


worriedgirl
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Date Joined Apr 2009
Total Posts : 1130
   Posted 11/22/2009 4:13 PM (GMT -7)   
They had to fix the patch where they fixed the ulcer cause the flap of the patch came up causing stomach acid and bile to leak out. She was so full of fluid it was coming out of her incision and her nose. They are not even sure she will heal from this surgery yet but they gave her only a 30-40% chance of surviving this. She is fighting but I'm worried it won't be enough. They said it could take months to heal and I don't think she has months.her belly is staying open til everything shrinks but she is on very limited times. She moving but has not woke up and does not follow basic commands.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


dontknowwhattodo
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 11/22/2009 7:34 PM (GMT -7)   

Worried Girl,

Hang in there, sorry you are going through all this heart ache and worry.... I am praying for you to have strength through all of this... take care

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/22/2009 8:04 PM (GMT -7)   

WG, thanks for the explanation.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


worriedgirl
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Date Joined Apr 2009
Total Posts : 1130
   Posted 11/22/2009 9:05 PM (GMT -7)   
Well now they found an infection in her stomach and the port. This is bad all the complications isn't it?
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 11/22/2009 11:51 PM (GMT -7)   
WG my prayers are with you!! and I appreciate everyone's feedback... it helps to learn what one might go through... providing supports for someone in these situations... we will soon be where u r so this helps WG thank u... and for all who help u.. thank u

allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 11/23/2009 2:34 AM (GMT -7)   
Hang in there, You are doing so well holding it all together.

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 11/23/2009 6:43 AM (GMT -7)   
she passed away at six am this morning.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/23/2009 6:52 AM (GMT -7)   
WG, I'm so sorry.   I am glad she is at peace now--something she couldn't seem to find while alive.  Please know that you did the best you could.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 11/23/2009 9:40 AM (GMT -7)   
WG I am so sorry for your loss, unfortunately your insticts proved to be right. You were there for your mum until the end, she would have been so proud of you and the way you have handled things. my thoughts are with you and your family.

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 11/23/2009 4:42 PM (GMT -7)   
well i went to several different funeral homes and ended up finding one that will cost us only 2000 for service, showing, casket, creamation and all other costs not outside costs though. great price and we took it up. so friday night i will be attending a funeral and one of my hardests ones.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/23/2009 5:05 PM (GMT -7)   

WG, I'm glad you found something reasonable.  I know this is a rough time, but I truly feel the worst is over for you.

Just remember, we are always here for you.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 11/23/2009 7:43 PM (GMT -7)   
((((Worriedgirl)))), Please accept my sincere condolences on the loss of your mother.
Hold you head of high ......you did a wonderful job through some difficult times.

Thoughts and prayers.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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