Monday, January 1, 2018
Mom had been sick almost 2 years. Really sick for about a year. Her primary care doctor couldn't seem to figure out what was wrong with her. I feel like she had 100 tests. She was nauseous all the time and couldn't keep food down. Her legs swelled. She was dizzy. Her primary care doctor finally referred her to a gastroenterologist back in the summer. For some reason she stalled going to see him. I have no idea why. When she finally went to see the gastro doctor he was able to diagnose her that day, well not officially but he suspected cirrhosis of the liver. A later blood test confirmed.
She told me that it was curable (not true). She told me should would get better (also not true).
Over the summer Todd and I decided to sell the house. Looooong story but we needed a fresh start and selling the house and getting completely out of debt seemed like it would be a great fresh start for us. It sold in a little over a month and we moved into a 3 bedrooms apartment until we are ready to buy a new house in a few months. We got the keys to the apartment November 11th. My mom had a gastro appointment on November 11th and since I was off work I offered to go with her. She didn't want me to go. For whatever reason (I think embarrassment). So I didn't go but I asked them to stop by the apartment when it was over and see me. For some reason I thought I'd have enough time to go back to the house and get a few things for the apartment before they came over. I didn't - Dad called when I was halfway home and said they were there. I told him to wait I'd be back soon but he said don't worry about it - not much to tell - he said mom was going to get better, but it would be a long road. So they went home and I missed them. And I think I will regret this forever.
Two days later on November 13th we were all in the house finishing up moving out - it was our last night there and it was kind of a scramble. We were closing the next morning so we needed to have everything out that night. My aunt called me about 7:30pm and said mom was taken by an ambulance from the house. I was able to get ahold of dad and he said he was on his way to the hospital, mom couldn't get out of bed and she had called an ambulance. I left the house and went to the ER. Mom was immediately annoyed to see me. My guess is she was annoyed that my aunt called me, and that she didn't want us to worry or make a fuss. Another part of me thinks she was just annoyed with my presence...she thought I was judging her. I stayed a little while but then left, there wasn't a lot I could do. She was being admitted and I would come back when she got a room. I went back to the house and finished up getting everything out and I said goodbye. I cried and cried. So many happy memories at that house.
Over the next few days I went to visit mom daily. The first day she was obviously in a lot of pain and didn't say anything to me. She slept and cried out in pain every once in a while.
She had a periocentisis the next day and that seemed to help with her pain.
The next day I went at night after work and I took Evan with me. She was a little better and talking and she talked to Evan a little. We didn't talk a lot, i didn't want to upset her or disturb her. As I was leaving I told her I loved her and I'd be back tomorrow. She told me she loved me too. I touched her hand and she said "whoa your hands are rough!" and I told her to give me a break I just got done moving! This was the last conversation we would ever have.
The next night I took Erin with me and Mom had been put on a cpap machine because she had a chest tube put in that day. She slept the whole visit. She had a lot of fluid around her lungs and the chest tube would drain that fluid. The immediate affects of this was it opened up a ton of space in her chest and her lungs were really struggling to keep up with the extra breathing room as crazy as that sounds. So she had on a mask that was helping her breath - and boy did she hate it. Also her kidneys did not seem to be working.
It went downhill from there - she stayed on the cpap and on November 17th, my 40th birthday the doctors decided that she needed to be put on a ventilator because her lungs were damaged and she needed 2-3 days to heal, so she needed the machine to breath for her. I left work about 2 and went to the hospital. We waited for the team to move her from PCU to ICU - she was to be immediately intubated when moved to ICU. I didn't really understand that this is how it would happen. I guess I thought she'd be moved to ICU on the CPAP machine, then we'd have a little bit before she was intubated. That was not the case. She was leaving PCU in kidney and liver failure.
When we left PCU she had a team of people with her helping her breath and they were RUNNING her to ICU, I guess because they couldn't transfer her with the cpap machine. Running behind her through the halls was terrifying and the full weight of the situation hit me but I had to keep it together for my dad. We waited in the waiting room for a while...I guess an hour? I had to go get the kids and since it was my birthday Todd was bringing home dinner. I went back into ICU and saw her nurse and she said everything was ok, she was safely intubated and they were just getting her comfortable. So I left. Dad called a little while later and said the doctor (Draw) came out a little while later and said everything went fine and that she had aspirated in her lungs earlier that week and that's probably why she was having such a hard time breathing. So he said a few days on the vent would heal her lungs.
We had 3 uneventful days, I would go see here every day and call her nurse one or two times a day to check on her - she was stable and resting.
Day 4 they tried pulling back her sedation (sedation vacation) and she bit down on the vent and was fighting it so they put her back under.
Day 6, November 22nd mom was completely off sedation and she wouldn't wake up. She started having seizures that afternoon, Dad called and he was upset. When I got to the hospital things did not look good. She was slumped over and just looked horrible. And she had this twitch through her face, neck and right arm. They were trying anti-seizure meds, I think they tried 4 different kinds before the seizures were under control. Some got pretty bad, and I would try and hold her head steady so she wouldn't be moving too much. It was hard to watch.
A nurse came to talk to me and told me how incredibly sick she was. She didn't mince words really - she said her liver was killing her - poisoning the rest of her body and that we should think about how far we wanted to go with treatment. Mom's ammonia level was 372. A normal ammonia level should be 20. Not even the doctors had seen an ammonia level that high. I believe this is what caused the seizures but there seems to confusion on that, more on that later. They started lactulose to get the ammonia back down. At this point I asked for the gastro consult which I wasn't aware - was not even consulting on mom's condition. So her ammonia wasn't being monitored.
The nurse asked me that when her heart stopped (not if) do we want them to do everything they could to save her. Probably only prolonging her life for a short period of time and most likely in large amounts of pain. I had not talked to a doctor at this point. We talked it over as a family and decided that mom would want us to sign the DNR. They put her on versed which was able to control the seizures - it also sedates her so she was in a coma.
The next day an EEG was performed and it showed damage. To what extent we weren't sure. We would have to wait and talk to neurology to find out. Her lung doctor used the term hepatic encephalopathy, but he waited on the neuro doctor to officially diagnose I guess. We went ahead and said dialysis would be ok. As my dad would say "to give her a chance".
The next day the Gastro doctor said she's not sure she will survive this. Or even wake up.
The neurologist ordered an MRI to look at the extent of the damage.
The MRI showed severe brain damage. Abnormal restricted diffusion which is most consistent with ischemic hypoxic encephalopathy. Whatever the hell that means. I guess it meant she was in a coma and would never wake up again.
They are not sure what caused the damage. The neurologist seemed to think it was lack of oxygen at some point. When I'm not sure. She was responsive to commands after she was intubated on November 18th. I don't know when it happened. I still think it was the ammonia level that caused it but no one would confirm that.
The neurologist called me since I wasn't at the hospital to see him when he met with my dad. he told me he didn't think she'd wake up. He told me if it was his relative he'd let her go. He said she is at peace and even if she were able to wake up she'd be in immense amounts of pain.
On November 28th we patiently spoke with all her doctors to see what each had to say about mom. They all pretty much said her prognosis was very very poor and the next step would be a tracheotomy and move her to a long term care facility or hospice - which she had already told Dad that she did not want. So we decided as a family that the next day we would have them remove the vent. We had the family in that night - so they could say goodbye. We didn't know how long she would survive off the vent.
The next morning November 28th at 9:30am they removed the vent. it was so unbearably sad and scary. Mom continued to breath on her own. We took it hour by hour. It seemed like she was breathing ok. About 2:00pm the got her a room in 3L - Palliative care. So she was moved from ICU, into the last room she would ever have. It was in the older wing of the hospital and with all the high tech machinery and fancy beds removed it seemed we'd gone back in time 40 years. But it was quiet and they had more than the maximum of 2 chairs in the room. They even had a twin sized cot they wheeled in for whoever was going to spend the night. We turned on the tv for her - tried to find her her favorite Judge Judy but were unsuccessful. My aunt who is a nurse and works with terminal patients had told me earlier that day mom looked like she would make it less than a day with her current breathing. I trusted her judgement so I knew I wasn't going to go anywhere. We sat around for hours. I don't remember what we talked about. I don't remember what I thought about. I just remember listening to every breath. And we got into the night her breathing because worse and more rattly and I knew it was close to the end. Though I didn't dare say it. My brother left to go home and get some sleep about 11:30. I almost told him he shouldn't go. I don't know why I didn't. A short while after he left I asked a nurse assistant to take mom's vitals. We had no monitors which drove me nuts. Her vitals were ok, bp was low but that was to be expected. I don't remember the exact numbers. The nurse assistant stood in the room with us for a while, bragging about how she worked in this wing because she was so good with the families. then she proceeded to tell my dad mom's breathing was called the "death rattle" which I had already known (because google) but I had been trying to avoid anyone telling my dad this. Thanks lady.
About midnight her breathing became even slower. And just got progressively slower. I texted my brother to come back no response. Then I called him and told him to come back. Her breaths became maybe 5-6 seconds apart. A nurse came in to administer more pain meds and anti-anxiety meds and I asked her if it was close. She said she wasn't sure - she said she'd seen people hang on with one breath every 20 seconds.
At about 12:30am, November 30th Mom took her last breath. Dad and I by her side. I can't even describe what I felt. Eric came back in a little while after. About 12:40am the nurse came back in to ask how she was, I told her she was gone. She called her supervisor and another nurse and they confirmed it.
I think we stayed another hour. Then we all went home and it was the most pain I've ever felt when I saw my dad leave the parking lot and knew he was going home to an empty house, knowing mom would never be there with him again.
The next day we went to plan her funeral.
When I sat down to write this I planned to write a few paragraphs explaining what happened. I guess it turned into a lot more. I'm sure I forgot somethings. But this is what I remember 1 month later. Today is New Years day and last night I was so glad to say goodbye to 2017.
I will miss my mom so very much. I still think about texting her pics of the kids before I catch myself and remember she is gone. I still have so many unanswered questions and constantly think about what if's. I'm not sure I'll ever have the answers I want/need. I guess we'll see. I wish I had done more above all. I love you Mom. And miss you so much.