Checking in after a month of silence

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mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 5/27/2009 11:04 AM (GMT -7)   
Hi "gang"
 
Thought I'd update on Mom's continued decline in health since it's been a while and we aren't in a better place.
 
Since my last update she has been on the lovenox inj 2x a day and her stomach looks like a war zone. Her skin is so brittle that a nurse touched a bruise on her arm and the skin ripped. shakehead
 
Over the past 4 weeks she has spent a total of 10 days between my sister's house and mine and the rest in the hospital. 4 days at Methodist...2-3 days with one of us....3-4 days at Methodist...2-3 days with us. Such a vicious cycle. She keeps having these encephalopothy (sp) attacks and man does that get messy. I wish there was some sort of warning sign with her but everything I have read, and that has been a lot, the "warning" signs are an every day occurrence with her.
 
When the attacks hit it's always in the middle of the night/early morning and she vomits and has a BM without even knowing it regardless of where she is. Both of my boys beds were messed up and now my sisters carpet/couch.
 
We did learn that the blood clots are under control and TIPS is open and flowing. Problem is her lungs are filling up faster than ever and they drain 3 liters every other day just to be safe. Could take more but don't want to risk it. The doctors are lost. Her antibody is now very high and the surgeons are VERY concerned about transplanting her.
 
We are all meeting with her primary liver doctor today, Dr. Monsour in Houston, to discuss with him our next options for the PE. From what I'm guessing we are down to 2. The drain that we put in her and we drain at home....or the talc powder.
 
She was put in this trip for the enceph...due to infection in the pic line. Last time it was the diff infection....
 
They have talked about moving her to a new center.
 
I'm thinking we're at the end of our road here. I wish there was a way to know just how much longer we have like this and what will take her.
 
I hate to sound so morbid but she suffers so much.
 
Anyway, thanks for listening.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/27/2009 11:14 AM (GMT -7)   

Mrsquickgt, thanks so much for updating us.  I was just thinking that we get so many new members who post once or twice and then we never hear from them again. 

I'm sorry that your mom is going through so much.  Is she taking Lactulose for the encephalopathy?  If so, perhaps it needs to be increased,..or has that already been done?  Perhaps you can get her to wear adult diapers.  It must be as frustrating for the doctors as for the patient and family, not knowing what to do next.  Does she have a Living Will?  Perhaps it is time for palliative treatment only, if there is no hope.  When you meet with her doctor, try to get some very straightforward answers.



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


mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 5/27/2009 11:34 AM (GMT -7)   
They increased her Kristalose (form of lactulose) to 6x a day. She wears the diapers at times but her skin is in such bad shape that it rips it or burns it. She is allergic to adhesives generally and the paper tape now burns her skin.

Yes, we will ALL be there today to meet with him and ask some straight forward questions. We aren't sure that we are doing the best thing for her tossing her from my sisters house to my house and back to Methodist. We both have small children and her family travels alot on the weekends. That's when I get her. So, with her being so suseptible to infections I'm not sure this is the best option for her.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/27/2009 11:36 AM (GMT -7)   
She may need nursing home care at this point.  I hope you get some answers from the doctor.  Let us know.

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


mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 5/27/2009 5:06 PM (GMT -7)   
Well

Just got home from meeting with the doctor.

They have officially removed her from the list here in Houston. As of last Friday, actually.

Her doctor doesn't want to give up so he will start calling other major centers tomorrow. Going to start with Dallas, and call in a "favor". If they say no he will call New Orleans. Jacksonville will be after them. Then who knows.

She will stay in Methodist for the next few days and then he wants to put her in Rehab next door for a week and a half or 2 to help her regain her strength and get her diet under control.

Had she have ANY other type of hepatitis this would not be an issue. Due to having the autoimmune type they just aren't willing to take her in. She has become to HIGH of a risk to transplant and their room for error won't allow her...basically. So, if one of these other centers has this "room for error" in their numbers right now they might pick her up. They won't do a chest tube for now until a center picks her up. If No center picks her up then they will proceed with tube. In the meantime, they will continue with current method for drainage every 48-72 hours.

I'm having a hard time trying to stay positive but I'm just losing that small ray of hope the further this goes. She had her legs crossed in the bed and went to lift one...skin got stuck and bruised. She is so fragile that a bruise ruptures and leaves open sores.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/27/2009 9:21 PM (GMT -7)   
(((((mrsquickgt))))), you have been through the wringer with your mom. She has one heck of a doctor though......he's not giving up so you don't give up yet either. I know that it hard sometimes.........usually those are the times when the caregiver is beyond exhaustion. Is it time to give yourself a little caregiving? Recharge your batteries. You may see things through a different light once you rest up some. Take care.........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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