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Originally Posted by AnnieB3
This is awful stuff.  I know, he needs something to keep him alive!! But look at the crap in it. It has milk and soy, both of which are inflammatory foods. I wish they would start using rice protein. Maybe they have a mixture like that for people who have celiac disease. I would ask. With all the stuff they put into that formulation, you'd think a little acidophilus would be a no-brainer.
Insist that your Dad get B12 injections. Look into sublingual B12 after he gets better. A body can't heal well without B12. There is 2.2 mcg. of B12 in the Jevity but that is a ridiculously small amount. They have mega sodium in it too. has a really good sublingual B12 called Jarrow (the brand name). It comes in 5 mg. (5000 mcg.). I take two a day.
Is your Dad a normally anxious person? I doubt it. What they do in hospitals, especially when someone is intubated, is to sedate them so they won't be a problem for THEM! It's so they don't have to be going into the room all the time. It's horrid. They did that to my Dad too. Ativan and Zanax will both make MG worse when someone who has MG is not doing well. And it particularly affects breathing!  That icon is for the doctors. And then you mix in a pain med which makes it that much worse.
They may also have to do more antibiotics. The problem is that when you are on immunosuppressants and you have too many antibiotics without things like acidophilus, you can get clostridium difficile. It's an opportunistic little bacillus in the GI tract that is a horrid infection. I've had it, not fun. So be on the lookout for - and I know this is gross - yellow puffy or runny stools. But that's life when someone you love is sick and in the hospital.
And if they haven't fully assessed the back pain, make sure they do that after he gets better. It could be from the Pred, which can cause brittle bones. He may need to be on lots of calcium and vitamin D plus some flax or fish oil. Prednisone is an anti-inflammatory but it's also known as an anti-prostaglandin. We need "good" prostaglandins like those found in nuts and oils, especially when someone is on Pred.
I forgot something. In MG, when muscles get weak, they can cramp and spasm pretty badly. It could be that your Dad's back is one big knot that needs working on by PT. They must have PT in a hospital setting!!! Kidding, I know they do. PT is hard to do while someone is intubated but if they do work out those kinks, his back won't get better - if that's what's going on. I actually "look" for those little areas every day and massage them. It works wonders.
I hope they can find a regimen that will work for your Dad. Ask lots of questions and keep asking them. It may tick of a couple of doctors but it will help your Dad, which is all that matters.
Annie |
Wow another amazing post!
The Jevity 1.5, I will see if they can get him on something else.
He wasn't normally an anxious person but I think he has been more and more since he got the diseases, and I know much more since he has been in the hospital. My half sister was there last night and is an RN and she gave us a bunch of good info and told them to give him a drip sedative (yes he hasn't been on one which she found amazing as she said they do this all the time to people in her hospital that have a vent). So for the first time in almost 3 weeks he got a good nights sleep. We are going to insist he gets it at night at least to help him rest and heal, that is a good thing right? The Dr. said that it causes more trouble breathing or something but what's the harm at night when the vent is doing all of the work for him anyway?
Also yesterday when I was there he definitely looked better, he had much better movement of his eyes and they were both open equally (his right is usually drooping or has been since all of this anyway). He actually was laughing at some of the stories we were all talking about which was good since we hadn't seen that from him.
I am not sure what Antibiotic he is on, I knew a couple of days ago, I want to say it starts with a Z.. like Zoysn or something.
They definitely need to assess the back after he gets to a good state since I still don't think he will be able to walk until they do.
You mentioned the spasms, which by the way he has been having these weird like shaking episodes where his whole body would shake. He feels as though he will fall off of the hospital bed. It happened once two days ago, but happened multiple times in the past 2 weeks.
Ya its getting very frustrating because I feel like unless we tell them stuff they either won't mention it as an option or just not do it, like the drip sedative which apparently they said the Dr. had ordered before but since he wasn't fighting the vent they didn't give it to him?!?!?!?
They also mentioned maybe doing the Trach surgery on him since it is much more comfortable and he could talk and eat on it after a while and if need be can be hooked up to the Oxygen to breathe. What are your thoughts on that.
Thanks again for all your help, it's amazing I can get more info from a complete stranger then I can from the Drs.