Members CynMarie77 Posted July 17, 2012 Members Report Share Posted July 17, 2012 My mother just passed away on July 11, 2012. I don't know what to say to describe what she had that ended up taking her from us, but I'll try.One Sunday morning my mom calls me that I need to come get her to take her to the hospital. When i get there she's holding herself up on the counter, barely able to stand. I sit her on the couch and she starts telling me things that make no sense, and hallucinating. I take her blood sugar (she was pre-diabetic) and it's normal. I call 911. We get to the hospital and the pulse ox monitor keeps going off. Nurses keep thinking its the machine, but after changing it out they determine that her oxygen sat is really that low - 70%. They start her on oxygen. After blood work they find her hemaglobin is 6 (should be 12-14 in an adult female). They give her a blood transfusion. However, this does not fix the problem and she is eventually intubated to help her breathe. Many doctors are called in, including a GI doctor and a neurologist. After many tests, they determine she has a muscle disorder called polymyositis, in addition to primary biliary cirrhosis. They start her on steroids to help her lungs get stronger and other stuff to help her liver. However it's a slow process, so eventually they have to put in a trache tube. She was in the ICU for 3 weeks, then moved to a LTAC respiratory unit for another 5 weeks where they were able to successfully wean her off the ventilator.She was discharged in October 2009 and went home where she lived on her own (successfully) until recently.After that our entire family became very cautious, making sure that she stayed healthy and any thing that came up we took her to the doctor or the ER just to be safe. Since her stay in the hospital and as a result of her disease, she had lost a lot of weight and had developed kyphosis (a hunch in her back). She also was very weak (although was still on steroids for her lungs). Regardless of all that, she still lived very well for 2 years.Then in February of this year (2012) she started complaining of being very tired all the time. Her birthday was 3/2 and we just thought she was doing too much (shopping, etc with friends). But early Monday morning 3/12 i get a phone call - deja vu. I rush over there. She says she feels very confused. I take her to the hospital where, while in the ER, she declines before my eyes. Over the course of about 6 hours she falls into a coma (later I was told it's encephalopathy). She had a build up of ammonia in her system from her liver not processing proteins properly. They admitted her for observation while treating her with lactilose (spelling?). I was assured she would be ok in about 48 hours, but would have to take that for the rest of her life as well as be on a very restricted diet to keep this from happening again. Ok, we can do that.Wednesday 3/14 I get to the hospital to find she is surrounded by nurses and doctors. She had stopped breathing. They intubated her, advised she may have aspirated some food (from the tray that was placed in front of her - with no help to feed herself and no one watching her). She was admitted to the ICU.Once in the ICU, she just went downhill from there. She had a feeding tube, and was intubated. Her liver kept causing a build up of fluid on her abdomen which was pushing up on her diaphragm which in turn kept her from being able to breathe normally, therefore weaning off the vent was an issue. She developed ventilator assisted pneumonia, was treated, etc....but then got another infection, treated, etc.....every time we turned around it was something else. Her platelets kept dropping, blood count kept dropping, multiple transfusions....on and on. Eventually they put another trache in because she couldn't get weaned off the ventilator and couldn't stay intubated because of breakdown in her mouth. After 2 months in the ICU, she was finally stable and they moved her to a the LTAC respiratory unit (same one from 2009).Many of the same RT's were there and they remembered her from 2009. However this time was much different. They tried just as hard to wean her, but the most they could get her to do was 2 hours off the vent, 3x/day...and even that was a struggle for her. She continued to develop infection, and after having the feeding tube in for so long her nose was starting to break down so they put in a peg tube. More transfusions, more fluid drawn off her belly. After a month they determined there wasn't much else they could do, and discharged her to a skilled nursing facility an hour away.She was in the SNF for 3 days. On the 3rd day her blood sugar kept dropping and they couldn't get it to stabilize. They had her taken to the ER at a local hospital where she slipped into a coma. They got her blood sugar stabilized and moved her to the ICU where she stayed for a week. Then she was moved to another LTAC facility where she spent her last month.They said it was a meningeal infection. Not meningitis, but like it.....a fungal infection. They treated it, but also found that she had had a small stroke at some point, but that it wasn't severe enough to cause the coma. After treating the fungal infection, she still didn't wake up. She passed away at 8:50 am on 7/11 - almost 4months to the day from when she was first admitted.I am an only child and she and my father had been divorced since i was 11. I am now 34 years old. She raised me, and even though my father lives in the same state, i stayed closer to her, and we were best friends. I could tell her ANYTHING...i called her 5-6x a day. She was my rock. When she first went into the hospital in 2009, i was in the 2nd to last semester of school - studying to be a medical lab tech. 2 weeks after being admitted, her employer of 37 years terminated her. I almost dropped out of school but she told me not to, we'd be ok. Unfortunately I was unable to find a job after I graduated and she was not able to go back to work, so for 2 years our finances suffered. I only just got a job in my field 3 weeks ago.I'm devastated. Emotionally, financially. I have family - her 2 sisters and my cousins and grandparents, and my dad.....but i still feel SO alone. I can't get my head or my heart to grasp what has happened. I can't sleep...i have to take something every night to go to sleep. I try to stay busy, play on the computer, watch tv...but the very second that im not doing something I start crying. I don't know what to expect to get from this support site. I don't know what to do at all. Link to comment Share on other sites More sharing options...
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