Mom has been declining since the EGD, and it's become a much more rapid descent this last week. She hasn't been eating or taking kristalose, which means she hasn't been moving anything out of her system. I tried to get her help yesterday, but she gets extremely agitated and combative when her ammonia level is this high. I called the primary doc and the GI, but the primary only refers to the GI and the GI is on call at the hospitals all week and isn't taking appointments. They said to call 911. I called the EMT's, but they are limited both in knowledge and what they are allowed to do by law. They couldn't do anything. Saw the primary today and he referred to the GI and ordered blood tests (which speaks to his lack of knowledge on the subject as ammonia testing of the blood has been an abandoned practice because it is not indicative of the ammonia level in the brain). I made an appointment with the GI for tomorrow, but mom refuses to let me take her. She has agreed to let the secondary caregiver take her.
For those who are wondering about her current symptoms, some are things we all do and that mom already does more often than others, but is now doing more often than *her* baseline. Other symptoms are those that only occur when her HE is out of control.
The symptoms that are exacerbated during an episode, and that she is displaying currently and for the past week:
• problems walking (fallen into 3 walls today, and has trouble with steps)
• memory loss (so severe that she didn't recognize her own car)
• missing time/confused time (i.e. she thinks what happened two weeks ago happened yesterday)
• stuttering and mispronunciation of words or using the wrong words
• sleeping way too much and having difficulty waking her (this is how it leads to coma...eventually I won't be able to wake her)
The symptoms she is currently displaying that she typically doesn't:
• lack of comprehension of simple questions (this goes beyond confusion...I asked if she wanted me to get her scripts and she said yes, that her phone has a dead battery)
• illogical thinking (although that might belong in that top list..but she's so far gone now that she can look straight at something and not know what it is, even her dogs; didn't understand why she couldn't make a 1:30 appointment if it was already 3:55; she took her morning and night time meds together this AM)
• she is extremely agitated and she hates my ever-lovin' guts (note last November when she told hospital staff that I took her to the ER to murder her)
• staring into nothing for no reason - I call it freezing
I plan to do the only things I can do; have the caregiver take her to the GI and hope he calls 911 and orders her into the hospital, keep her safe and comfortable at home and hide the knives, encourage her to take kristalose and pray harder than I ever have for her to poop. I don't usually go into pooptalk on here, but it's the only way to get the toxins out of her system when the liver fails to be a filter, so our lives really do revolve around poop. Sad, but it makes for some great jokes and at least makes us realize what's important and puts things in perspective. It's such a different viewpoint on life when someone is running a red light, endangering everyone around them, so that they won't be late for work, yet my mom could go to sleep tonight and not wake up tomorrow because she isn't pooping enough and medical professionals aren't familiar with her condition to treat her even though they can recognize, as one EMT stated, "she ain't right." That red light and being late for work just seems silly in comparison to poop now, doesn't it?
So love your family, take care of your livers, remember to support the liver life walk because it is all about research and education to stop things like this from happening, and pray for poop. <3
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