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Update on my MIL

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Posted 3/29/2011 2:27 PM (GMT 0)
yes prayers for you and your family... Sandi
Posted 3/30/2011 1:50 AM (GMT 0)
Just got back home, been at the hospital all day. Not much improvement, she will open her eyes and look at you, calling out our names and saying she needs to turn over. She has been in lots of pain, morphine doesnt seem to help much right now. Her doc for her liver came in and said she was in a coma, and that something isnt right. Going to start her on another med, with her lactulose, see if it helps. She has blood in her urine and the urologist is running tests. Hope to find out more tomorrow.
Don't know how to feel or what to expect, but I have a really bad feeling. :(

Will update as soon as I know more, Thanks for being there
Natalie
Posted 3/30/2011 1:57 AM (GMT 0)
Natalie, Thinking of you. Tough time for you all. Carol
Posted 3/30/2011 2:29 AM (GMT 0)
Oh Natalie I'm thinkng of you, especially when she was slowly on the up. Know you and your husband have done everything possible for her and some things we just have no control over. Keep up your strength and really thinking of you all. Take Care
Krista
Posted 3/30/2011 3:53 AM (GMT 0)
thanks for posting... thinking of you and your family.. and prayers for all of you today... Sandi
Posted 3/30/2011 2:15 PM (GMT 0)
Bad news, last night at 12:30, we got a call from the nurse. Her breathing tubes were swelling shut, and her heart was straining to keep up. We made the decision to intubate her, to make it easier. This morning we went up she is a medically induced coma, so she is resting, but she is only attempting to breathe about 3 times a minute on her own according to the monitor.
My hands are full with Mark, he is so upset and hurting. I dont know how to help, all I can do is try to soothe and comfort him, just be there.
No one knows what is going on with her, cant seem to figure out, although they did say something about veins bleeding in her stomach. So more tests today, hoping to know something.
Please keep us in your prayers, because I think we are at the end of the line.

Natty
Posted 3/30/2011 6:30 PM (GMT 0)

Natty, does she have a Medical Directive in place to let her wishes be known should the next step be a ventilator--yes or no?  Also should have a directive about tube feedings.  In general, would she want to be kept alive by artificial means?  I hope this has already been decided, as it's a hard and emotional decision for the family if this isn't in place.

As Mary stated, sometimes people do come back from the very brink--just as her husband, David, Rick, and I did.

Hugs,

Connie

Posted 3/30/2011 9:27 PM (GMT 0)
She has told us her wishes, but never actually had it written out. SO now, it is a struggle, trying to make him realize that its needs to be whats best for her. Dont know whats next, but her doc said today, it is a teeter totter for her right now, and she is on the verge of tottering off. We will see what happens next.
Posted 3/30/2011 10:41 PM (GMT 0)

We're thinking of you guys and appreciate your keeping us up to date.

Hugs,

Connie

Posted 3/31/2011 11:28 AM (GMT 0)
All my love to you and your husband. It must be a very terrible time for you both. Thinking of you both.

Try to take a break when you can and look after yourselves as no matter what lies ahead you are going to need all your strength.

Praying for you all tonight xxx
Krista
Posted 3/31/2011 1:23 PM (GMT 0)
Natty,

So sorry to hear this...I was hoping she would continue to do better.

You're in my thoughts and prayers...........

Posted 4/1/2011 3:01 AM (GMT 0)
Oh my Lord! This disease is crazy! I don't understand it at all, really I don't. I am glad to say, she is off the ventilator and doing much better. I just don't get how someone can go from literally knocking on deaths door one day, to being ok the next. She is still in really bad shape, but she is talking, able to sit in a chair and taking in clear fluids.
When we went in this morning, she was awake and asking everyone who came in about removing the tube. Well pointing to it and acting like she was pulling it out. Finally around noon, they took it out. She is breathing good, it was never her lungs that were the problem. Her breathing tubes were closing on her. THey have her on a steroid, which the lung doc said is why it is better, but they are taking her off it tonight or in the morning, so I am afraid it will happen again. Her ammonia was down to 50 today, 80 yesterday, and on the 60s the day before. Whatever they added to the lactulose is seeming to help, for now. I just dont know when the ball is going to drop again. And honestly, how much more I can take. I am so mentally exhausted from it all and dont know how to shut my mind off. I really dont have a good feeling about all of this. I know I should be glad that she is doing better, and I am, but this is so tiring and confusing.
I dont know how much longer any of us can keep going through this......

Natalie
Posted 4/1/2011 4:19 AM (GMT 0)

Natty, it's a roller coaster ride and it takes a very strong person to stay the course.  This is why we are constantly telling caregivers to take care of themselves and get a bit of time away.  It is soooo important. You sound like you are burned out.  Try to practice some deep breathing exercises to relieve stress, and get some decent rest and sleep.

Hugs,

Connie

Posted 4/1/2011 8:33 AM (GMT 0)
Natty.... most everyone going through what you are going through feel the same way... just when one thinks ...... it's gonna be over... the person is going to get a treatment that works.... or that well... it goes on longer... and with more difficult barriers.... or struggles.... honestly... when you express those deep dark feelings... you help me... for I felt and do feel so guilty that I felt that way as Mike and I walked the journey together.... it was such an emotional roller coaster... and during the low points... I felt so bad... so discouraged... and so down on myself for having those feelings... and then.... I just plain didn't know how long I could continue... and I felt that way for many many years... there is no easy answer... you must take care of yourself... your children... and yes your fiance..... but yourself first... sharing with others helps... both you and them... the best thing I can tell you is to learn to breathe in the moment... you have to learn to turn off the racing thoughts.... and that my dear is a hard thing to do... myself being the worry wart that I am... my thoughts and prayers are with you Natty today and everyday as it is with your MIL.... children... and fiance.... Sandi
Posted 4/1/2011 8:57 AM (GMT 0)
Natty ,... Best wishes and prayers to yourself , your husband an mother -in-law . Sometimes things happen for a reason that are unexplainable ,my doctors had given me up for dead,and the family was told to prepare for the worst. However after 11 months of sobriety , healthy foods meds etc, I'm still with the living.Please keep the faith many people are praying for you all.
Karen and Mick
Posted 4/1/2011 10:50 PM (GMT 0)
I do feel very guilty, when I get aggravated or just plain out annoyed. I am just human and this is very overwhelming. We will get through this one day at a time. I most definitely have faith, if not for prayer and God getting her through, she wouldn't be here. It's just non stop something with her any more, I knew the human body was strong, but just never knew how much.

I am taking a little kid and mommy time today, left the hospital and got them, and we all just came home and chilled. I took a long nap, kids played on the computer, and we just relaxed. It is nice to be away from the hustle and bustle of the hospital after being there day in and out all week.

Thanks for being there every one. It is glad to know others had the same feelings as I do, and there are people who understand my viewpoint. I am not sure Mark does, it's his mom, so I dont think he lets him wear him down like I do. But he has been dealing with it for years and myself only months.

Natalie
Posted 4/2/2011 1:12 AM (GMT 0)
Natalie, glad you got a nap.  You MUST take "me time."  You have a lot on your plate, but can't give up everything for the MIL.

Hugs,

Connie

Posted 4/7/2011 4:28 PM (GMT 0)
Just wanted to update everyone on Anna, my mil. She came home on Monday, and so far has been doing ok, for the most part. They started her on an antibiotic to go along with her Lactulose. I think the one they gave her was Neomycin. Her insurance wouldn't pay for the other, so they gave her this one and said it works just as good. The only problem is she didnt get it until yesterday. The pharmacy couldn't read the prescription, then they had to get approval. So, just in the 2 days of not having that, her bm's went from normal to almost hard. We have finally come to realize that, when her bms are a little more runny, she is doing good, but when it starts getting firm, she starts getting sick It is weird how you can tell from someones bm. Lol, I never thought I would be writing about someones bm's so much!!! I notice changes in her personality also, when her bm's change, She gets very grumpy, mean. Yesterday she really had a hard day with yelling at the kids, but I reminded her they are kids, and she settled down. I am hoping this new medicine does the trick for a while. THey put her back on 2 tbs 4x a day of lactulose, which is what she was on before, so I really am counting on this new med.

It came really close this last time. No one, including the docs thought she was going to make it. We pretty much know that her time is about up, and the next bad spell may get her. We enjoy the time we have with her as much as possible, and try to make her happy. We finally told her, she isn't going back home. She was set on going home, but that isn't a possibility. So Saturday, we are going and getting her lift chair and some of her foods from home that she likes. That way, it will save us a little bit. The last couple of weeks have been expensive. I can guarantee, we went though at least $500 right before and while she was in the hospital. We didn't think we were going to have her and didnt want to leave until we were literally dropping in our tracks.

I hope everyone is doing good. I just want to say thanks once again for all the support!

Natalie
Posted 4/7/2011 8:25 PM (GMT 0)
I took neomycin for several years, before getting xifaxin. The main difference is that neomycin makes you more gassy and runnier, plus they need to keep checking on her kidney functions. A small percentage of patients have kidney problems and it takes time for any damage to occur. They checked me monthly and there was never a problem. I got xifaxin because my hepatologist thought my insurance would pay for it and it would save me a couple of trips to the toilet each day. Neomycin is an acceptable alternative to xifaxin if your insurance won't pay for the higher priced spread.
Posted 4/7/2011 9:35 PM (GMT 0)

Hi, Natalie, and thanks for the update.  Couldn't you have given her the Lactulose while you were waiting for the Neomycin to be filled?  That would've helped.

Have you noticed the price of food going up again?  It's expensive to eat the way liver patients are supposed to.

I hope things stay stable with your MIL for awhile.  Keep us posted and remember to take care of YOU.

Hugs,

Connie


Posted 4/8/2011 2:21 PM (GMT 0)
Thanks David, that would explain the gas shes been complaining about. I gave her a gax x. It seems to be working for now. She does have kidney issues, so we are worried about it. When she was in the hospital, there was blood in her urine, so her kidney function, although it is still ok, is not great.

Connie, We did give her the lactulose, but it just doesnt seem to be as effective as it used to. Even with adding more doses to it. Yes, the prices of food are outrageous and convincing her of what she should eat is even more so. I have told them both about beef being harder on the liver, but she still insists upon eating it. We don't have it too often though, just to make sure she doesn't over do it. She goes back to her hepatologist in a week so maybe I can get him to talk to her about it. It is so crazy, trying to get things through her head sometimes, she is very bull headed.

We are hoping she stays well for a while too. I don't want to go through another week of hell any time soon. I get to get out this afternoon, go get some groceries, which might turn into 3 hours, lol, just to get away!

Talk to you all soon,
Natalie
Posted 4/8/2011 6:50 PM (GMT 0)

Take your time at the store, Natty.   devil   smilewinkgrin

Hugs,

Connie

Posted 4/8/2011 7:05 PM (GMT 0)
Stop buying beef, it will save a lot of money and be better for your mil.
Posted 4/9/2011 12:54 AM (GMT 0)
I don't buy it, but before Mark knew, he bought a cow last year, so we have a deep freeze full of it!

Connie, I took a lot of time, even went down some aisles twice!!!!

<3 to you all
Natalie
Posted 4/16/2011 3:31 AM (GMT 0)
Well, we had a good couple of weeks, thought the new medicine may actually be doing the trick for her today, but I thought wrong. My daughter yelled for me at 6:30 this morning and told me she thought Anna was going into a spell. I cane in there and she was standing there, with a very absent look on her face and just kept repeating 3 phrases. I just don't know, yep, and aint that something. I knew she was going into it. I called Mark home from work, and so the day began. It wasn't as bad as far as last time goes. We have been able to keep her home so far.
She acts quite different this time though. Very much like a child. Crying off and on all day, when you touch her or try to get her to sit back. The last few hours she starts crying almost like a preschooler would complaining of her belly hurting. about 4 this morning, she started complaining of her stomach hurting. Then the spell today. It's crazy, this dang disease. I never know what to expect.
Just thought I would update. If she keeps complaining of stomach pain we are going to take her to the e.r.
Keep you up to date.

Natalie
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