Friday, December 23, 2011

Crap!

Mom is still in hospital. She is in the rehab unit, but not doing much rehab. We had a peg tube put in on Wednesday because she was not getting her meds down and it is absolutely essential that she get her blood thinner (Predaxa) down. She also was swallowing very little. She can swallow, but after a few times swallowing, she just forgets how and it just sits in her mouth until we get her to spit it out. It is very frustrating. Speech therapist has never seen a swallowing issue like this. Now they are weaning her off the IV nutrition while using the peg tube, but not allowing her to swallow anything. We didn't know it would be this way or we might not have agreed to it. She has a living will which specifies no heroic efforts. Doc assures us this is not heroic, but we want her to be able to keep working on swallowing food. They assured us that she could eat by mouth some and get her meds through the tube. So far, this has not happened and it is Christmas now and the staff is limited. The only thing she has to look forward to is eating...now we have taken that from her. She did some therapy yesterday, but was asleep when I got there after my root canal. I couldn't even make her wake up enough to tell me good night. She got gout in her good foot, which made her not be able to stand up. They gave her a steroid shot which helped that, but also sent her blood sugar through the roof. We are all frustrated.

3 comments:

Linda said...

I can't even find the words to explain how much my heart is breaking for you and your brother. I can only pray and will continue to daily.

Anonymous said...

Feeding tubes can be a temporary measure till she gets her swallowing back. That could take some time and work with the speech therapist.
Vital-stim, I say again. They may or may not be able to do it. But it is approved now and lots of places use it for swallowing therapy and IT DOES WORK.

If you can prompt her to swallow, why spit it out? If she can swallow. Even if she is swallowing she may not be able to eat enough to keep her going without the feeding tube for now.
I know of someone who had a stroke like dad's.....the guy had already said he didn't ever want a feeding tube and he lasted about a week in the nursing home.
If your mom can understand you , you guys need to ask her what she wants to do. If she gets this tube taken out down the line...you need to know if she ever wants one again, so the decision is hers and not hard on you guys.
All her meds can go down her peg tube. Most can be ordered in a liquid form and those that can't, can be crushed to powder and put down with water.
They have done a swallowing evaluation , haven't they? where she swallows while they watch on an x ray type machine to see how her throat/mouth/tongue are working.
This is all hard enough for you without having to make very critical decisions.
Research online if you want to know anything or ask the nurses or doctors questions straight out....don't beat around the bush or think the doctors are gods and not question them...they get tired, have family problems and such that makes them human just like us. If you read of something you want them to try or think might help...suggest it.
I don't believe you are the kind of person to just sit back and let things happen...being a teacher. Maybe I am wrong though and you would rather put all your trust in the docs...that is up to you and how you want to handle it....I am just not one to sit back and not make sure in my mind that what they are doing is the best thing that is out there. New techniques medicines are coming out all the time.
I am sorry to be so straightforward , if I have hurt your feeling, I am sorry.
I am a straightforward kind of person.
If you'd rather I can just cheer you on...try to keep up your spirits and such.
This is a very hard road to go down, it doesn't get much easier , there are just days when it seems to be a little easier.
Enjoy your mom while you have her.
She may be tired of all of it, ask her.
Beth

Anonymous said...

You and your brother..get out her living will and read it very carefully. Look up terms you may not be quite certain on.
I swear , I know this is hard. And as stressed as you all are...it is hard to think sraight.
If prayer is your thing..I would do that.
Beth