It's been a long day and night

My mom was taken to the hospital yesterday for severe weakness, confussion and possibly dehydration. When we arrived I was overwhelmed to see her pulse was 167 a min. So confirming dehydration. She was sent to get a cat scan of the brain and stomach while cultures were done. I waited for about 2 hours. When I was brought to her room it was like I no longer was looking at my mom but perhaps a stranger. Blank stare was no longer responding to her name. She blankly looking to the side. I felt over upset I kept asking what happened what happened?!?!!?!! Doctor said very high ammonia levels in the body were causing the extreme confusion. Her levels were 116, ours run about 10. So the doctor came in asked some questions the says to me " who's your mothers power or attorney" in total shock because after many years of this I've never been asked that. My brother I replied they said alright and took his number. Then asked does was want to have CPR preformed. I said I just don't know. Upset once again about these question ANC confused. Doctor says you know we've moved past ESLD and were in liver failure. I'm not saying lets make a care plan treatment today but that's something you need to be considering. I stayed with her for a while , with the same blank look on her face. I talked to her told her how much I love her. Too the moon and back to be exact. I haven't managed to get any sleep. I'm very sad and I feel like my heart is breaking. Just for one minute I want my old mom back. When she could tell me everything's okay and silly jokes to cheer me up. Needless to say this journey is going to be very difficult.

Ang,

I'm so sorry about your Mom being so sick. Can you give us a little background on how she came to this point? Her age, diagnosis prior to this? How is she today?

The high ammonia levels are treated with lactulose. You may be familiar with it because most folks with ESLD take it to keep those levels.down. Are you in a major hospital and does she have a hepatogist? I'm just hoping that doc is mistaken and may not be a specialist.

Are you there now? I'm waiting for your reply, there may be something overlooked. Otherwise I'm afraid Ziff is right and hospice would be the way to go.

I'm hoping that fluids and large doses of lactulose have brought her around as they have so many times with my brother.

But get back to us ASAP because we have tons of people with a plethora of combined experience and knowledge and will be posting soon to offer help and support. Hang in there dear and come back often. We care.

Hugs
Mae

 Ang , Did she say she wanted to let go or not . When I saw your post I briefly went back through your prior postings here and you noted earlier she didn't want to go through anymore medical intervention . It's a shame , She's so young and could possibly move on to a healthy life . Getting a second opinion is fairly easy and it will give you all piece of mind that everything was done to give her that second chance should she want that . I and so many others lose faith for brief moments while under the strain of this disease . Sometimes all we need is some encouragement and the feeling someone has our backside .

 Ziff

Ok I see Ziff and I crossed posts. I hadn't gone back to old posts but I hope mom has changed her mind about no intervention at her young age.

Ok so there may be more to it. I would ask mom to tell the nurse or sign the form that lets the staff discuss her condition with you, obviously when she is alert. Just tell mom you want to be able to understand everything and maybe she will allow it and by all means keep a copy.

Even when you call in to ask, say late at night, you'll be able to get status if you can't be there. You should jot down her patient number as they often ask when you call her nurse for info.
Then you can ask the doctor all your questions. And question anything you don't understand, you need to advocate for her.

Hope you're taking some timeouts for yourself. Check back in soon :)

Post Edited By Moderator (hep93) : 7/22/2013 11:45:54 AM (GMT-6)

Ang,

I am sorry that your mom is so sick...and that you are feeling scared. I agree with the others, your mom is much too young to be so ill.

My mom passed away a bit more than a year ago. She did not have liver disease (my husband does and that is why I post here) she had necrotizing pancreatitis, which at the end caused her liver and kidneys to fail. So during the last days of her life, she had high ammonia levels and was taking lactulose and xiafaxan, which is a medication that also clears ammonia from the body.

As Connie was saying, the lactulose can be given in other ways if your mom cannot swallow. My mom had a feeding tube and that was how she received the lactulose and xiafaxan.

I hope that your mom's ammonia levels can get down in the normal range...that she can rally and regain some of her health. She has youth on her side.

As others have said, during this very stressful time, it important that you take good care of yourself.

My mom was in a coma state near the end. Even though she could not speak, my dad, brothers and I were always with her, giving her kisses, holding her hands, caressing her brow...whispering in her ears...praying for her aloud together. I know that she knew we were there...and we all found comfort being with her and with each other.

I will light a candle for you and your mom tonight. Praying for you both.

Emma

Post Edited By Moderator (hep93) : 7/22/2013 8:17:18 PM (GMT-6)

She's doing okay. The restlessness that she seemed to have yesterday and last night have seemed to go away. It was a relief. I went and visited her and she was sound asleep. I didn't dare to wake her. So another day, day or praying and sadness. Emotions are crazy but I know they'll be bad days and good. I'm disappointed in my family for their lives are so busy that can't take time out and comfort her.

Just when you need your family most...not there. What a shame. Anytime you need a shoulder, or an ear, you know where to come. Hope you have a better day today along with your mom :)

Hugs

Feeling better. We found out my mom will be heading to a rehab center to get her some strength so she'll be able to walk by herself! Which is an answered prayer. Then also the hospital has ordered 4 days a week of in home care. Which is also a relief. So today was like a 1000 pounds off my shoulders. It's what she needs and us. Today was a good day. Thank you for your kind words :)

Thank you Connie!! I'm going to get in bed :D

So let me ask this. When the doctor orderes in home care what does it mean? Is it away to help prevent dehydration and a care giver to help with ADL's or is it away to help with her final stage of her illness? I'm obviously very confused and lots if emotion. Yes she has liver failure yes doctor said its apparent others systems are slowly shutting down. She can't walk by herself she had trouble talking long sentences. I just don't know what to expect anymore

Ang, I totally agree with Carol. Speak with the SW or whoever is setting up the home health care. When I had it for an extended period of time, they managed the wound vac I had in my midriff and took vitals, brought supplies to the house or had them delivered, etc. The nurse came 3 x a week. But I wasn't as sick as your mom...just needed specialized wound care. At another time, I had a PT come check on me every other day for a week, and a nurse come twice in the same week--and that was it. Sometimes they will take blood, if it is ordered.

It does vary by state and insurance. Most do not come full time, even if ADLs (activities of daily living) are included. That's where Hospice comes in...they will come more frequently, give respite to the family, and at the end will stay around the clock--again, according to protocol where you live.

The important thing is that she will get care at home and if there is an infection or some other critical problem, it will be spotted right away.

Hugs,
Connie

Ang, at this point, perhaps it's best for her to get in-home home health care and then hospice services. She probably just wants to be at home. You could also look into Meals on Wheels. Their meals are very bland It's for those who can't cook their own meals.

Hugs,
Connie