My Mom Has Myasthenia Gravis

I posted just yesterday about our trip to Alabama and asking for prayers for my mother because she was in the hospital.  This blog is fairly new and so I haven’t had the chance to mention my mother.  She was diagnosed with a couple of horrible diseases last December, Myasthenia Gravis and Dementia.  I am sure that you are all aware of Dementia and the affects that it has on the mind.  Some of you may or may not have heard of MG.  MG is a horrible disease that affects the muscles in ones body.  My mom has gotten so bad off that she is now living in a nursing home.  My dad tried to take care of her for a while, but the needs my mother needed, he could no longer meet.  So, he made the decision to put her in a home. 

My mother’s MG has affected her throat and tongue muscles so she can no longer speak or swallow.  She has been feeding through a Peck Tube since December of last year.  She is no longer able to control her bladder or bowels.  She seems to be content in the situation that she is in.  But one can not really know what is going on in her mind.  In a way I suppose that having the Dementia has been a blessing so that maybe she doesn’t really know what is going on and  can’t be sadden by the entire situation. 

Normally when we visit her she is responsive and writes on her note pad, mumbling “I love you”, smiling, hugging, nodding and shaking her head.  This last visit with her on Saturday, when we took her with us to the pumpkin patch, she was none of the above.  It was though she was ignoring all of us.  Not on purpose of course, but it was just the way she was. 

She had on her Alabama ball cap and Kelsie kept saying “Granny, I like your hat”, she acted as though she didn’t even hear her.  We told Kelsie that the cat had Granny’s tongue.  She just sorta “existed” (that would be a good way to describe her actions).  She sat in an electric wheel chair that my dad had borrowed for her, but daddy had to walk along with her and work the controls.  They sat under a pavilion while we all went and did everything.   She didn’t even crack a smile.  Daddy mentioned that for the past month or so she has been unresponsive to his visits.  For example he would come in to see her and she would be laying on her bed facing the window  looking outside.  He would speak to her and she would roll over on her back, not really looking at him, and then after just a couple of minutes, she would roll back over and face the window.  She used to either lay and face him while he visited or she would be sitting in her wheel chair or in the chair beside her bed. 

Then on Sunday night (around 9) the phone rang and it was the nursing home.  The RN said that she couldn’t get my mother to wake up to get her vitals.  They tried cool compresses to her forehead, they tried jostling her, calling her name, and nothing could get her to rouse up.  She said that they were going to give her oxygen because her blood pressure and heart rate were high and her oxygen level was low.  They would call back in 30 minutes or so if they couldn’t get her to respond by then.  Almost 10 and the phone rang again.  The RN said that nothing had changed and that the Dr had said to call the ambulance and take her to the hospital.  So, daddy and I went to the ER where she was taken and we waited.  The Dr in the ER came out and got us, we spoke to him and they knew nothing at the moment she was awake then, but still unresponsive to us.  She rolled over looked at us and then rolled back over like we weren’t there.  The Dr needed to speak to us about her “Code”.  Apparently she is “full code” which means (incase you are unaware) to do everything you can to save a person’s life.  The Dr urged us that this was not a good idea, because of the state that she was in.  She would never be any better and that living life that way can’t be a great pleasure.  I was crying, not knowing what to think.  The only thing that I could think of was “Oh my God, my mother is dying”.  Daddy ask if they thought that she was going to code that night and the Dr said he had no idea because they weren’t sure what had caused the comatose.  We were urged to call family and talk it over.

A phone call was made to my brother and we decided that a DNR was something that needed to be done.  I think that was the hardest decision I ever had to make. 

Mother had all sorts of tests ran and her oxygen level went back up.  She began to become her “normal” self.  (normal for her over a month ago)  She has pneumonia again.  Something that she had back in November of last year.  She will stay in the hospital until she recovers from it.  They also won’t be feeding her as often as they were to keep fluids out of her lungs. 

So far nothing has come back out of the ordinary for her, thank God.  Daddy and I fear that the MG is starting to target her lungs.  All that we can do now is just pray.