Monday, June 4, 2012

Mom Update

I can't keep typing/texting/relaying the same info over and over again. But since we have so many great friends who are wanting to know how she's doing, I figured I'd post here. 

I'll let you know what I can without violating her privacy.

Kayla and I went to see her on Saturday. We'd been told via a conversation that an aunt had with a doctor that he saw cirrhosis and of course, the malnutrition. (We'd already been told she had a vitamin K and a protein deficiency.)

Let me back up and minute and say that she's been going to the ER at least a few times a month for several months (as well as seeing a  dermatologist) who kept telling her that she was fine and that she had dermatitis.  Well, she had no insurance coverage. Seriously?  Well, lo and behold, she gets approved for medicaid and all of the sudden she's being admitted with a life-threatening condition.  Kentucky WILL be hearing from me. I hope to make several of you cry. But I doubt that will happen since you have no souls.

So, of course, we're thinking severe cirrhosis (even though her blood tests were supposedly coming back with only slightly abnormal liver function.)  Kayla and I headed down.

After being snapped at by a nurse that she couldn't tell me anything without mom's permission (of course...I have no problem with that, but she was a rude snat both days I was there), I was able to talk to mom's nurse and find out that she has scurvy. Yes, like a pirate. She has a severe vitamin C deficiency (as well as every other vitamin you can think of.) That's what causes the rash and the sores. They are also on the inside so that's why it hurts her to eat and she has basically stopped eating altogether.  She does have some scarring on her liver. (I read the chart over the nurses shoulder as she was reading it to make sure she wasn't leaving anything out.) But it didn't seem to be a huge concern for now.  They've done a biopsy of her liver and her small intestine. Those results were not back yet.

Saturday, she was sitting up, joking around, talking to the kids, and very coherent.  She even ate a few bites of one of her meals. (I checked her chart.)  We left feeling like she might be ok if they get the nutrients into her and get her to start eating a bit.  She'll need home health care, but we felt pretty positive.  We were there in the early afternoon and evening and both times, she seemed sick, but hopeful.

Sunday when we got there, she was bad. She was incoherent. She was nodding off (even though it had been many hours since her last pain medication dose.) She was saying things that made no sense for the conversation. And she wasn't eating. At all.  One of her doctors came in and suggested lidocaine spray in her mouth and a pureed diet so that she could maybe tolerate some food. She tried to argue with them. I hope they have enough sense to know that she's not well enough to even make her own decisions.

Doc also seemed concerned while listening to her lungs.  She's confined to the bed, so I hope they are moving her a little bit to keep her lungs clear and to keep blood clots from her legs. Getting info out of mom was only slightly more difficult than getting it from the people that work there.

I left my number with the nurse and told them they had her and my permission to call me for ok on decisions and any news.  Kayla had to work today and we had to come home - besides, I certainly can't afford to stay in a hotel for an undetermined amount of time - so I may just have to go back soon.  

Anyway, I'll use the blog to update so that I can do it all at once.  

Thanks for thinking of her.

Crystal, Kayla, and the kiddos


  1. Can you get a medical power of attorney? Still praying for all of you.

  2. I'm so sorry, Crystal. I was thinking the same as Margaret. Is there anyway your mom would sign over medical power of attorney to you, Kayla or someone else? That way you guys could get her on a feeding tube possibly until she's at least physically stable?

  3. Crystal: I was also thinking that. A Health Care POA is your best bet to be able to be privy to her medical information, test results, and any decisions that need to be made when she is in this shape. She should have one for her own safety and for your sanity. Clearly she isn't in any condition to be making decisions for herself. If you have this then the doctors and nurses are more apt to comfortably talk with you. In Illinois it is not legal for them to talk to anyone without this. I obviously don't know what Kentucky laws are but it sure wouldn't hurt anything.

    With that said I sure hope she gets better soon and good luck with all of the rest.


  4. Good grief Crystal. Does your mom have people in Ky to visit her, and make sure of things? Like what things, I don't know. At least she's in the hospital now, and not at home.

    Still dancing in the rain.

  5. Sadly, if she's not coherent etc it may be to late to get a POA/Health Care directive signed by her. If she's already not in a state to to make decisions about her health care, then she's not in shape to sign the document either. Which leaves you having to get a court order for a guardianship.

  6. POA helps, but it is still hard to deal with (or even know) all the details unless you are nearby. You're all still in my prayers.

  7. Ask to talk to a hospital social worker asap. It might be too late to get a POA but they will help you get one if you can.