A new analogy has come into my life and has taken over. Imagine being stuck on the raging bull (or any other gnarly roller coaster at your local amusement park) and you are strapped on and can’t get off….for days and days and day and days. Welcome to my life.
On top of being exhausted every day (read previous post) I am now fighting through constant set backs and small victories. Those small victories also come with a million different tiny complications that may or may not happen. I swear doctors are the only people who can be wrong at their job and get paid big money for it.
Mom started bleeding internally, which we knew was a strong possibility. We just didn’t think it would happen within days of her starting the blood thinners. Because of this they had to stop the Hephrin aka the blood thinner.
They did two scopes and found a clot around her feeding tube either by the stomach or somewhere in her throat. When they did the first scope, they were able to determine the bleeding had stopped, hence why they found a clot. How don’t I know for sure where the clot is you ask? Well because the people who did the procedure has yet to come and talk to us about either of the two scopes they did. It’s talks between other nurses and doctors that we had to accumulate that information. They took out the feeding tube for a night. They were going to do a third scope today but decided not too.
Today they put in a smaller, more flexible feeding. This would be great news however, the doctor put it down through her mouth. We are all really upset about this. She already tongues at the intubation tube in her throat. Putting a feeding tube through the mouth can only cause more possibility for her to tongue at it and pull it up, aka a chance for more bleeding. She didn’t have a problem with the feeding tube going down her nose (no nose bleeds or other complications). The attending Dr. on the floor today said he put it down her mouth because and I quote “A study done by a dyeing patient in the 80s said she wasn’t hungry”. It’s clear where this new attending Dr. stands. He thinks my mom should start comfort care because, hey if she’s dyeing she wont be hungry anyways. WHO SAYS THAT TO A FMAILY IN THE FIRST PLACE. And why are you telling us a story about medical care from the 80’s, its 2018 ya old dinosaur. Ultimately her end of care will be decided by her main oncologist, the other teams working with her and our family. Thank god this old bow tie Dr. isn’t having the final say in my moms care or we would have started end of life care already.
Are we heading for end of life care anyway, most likely. Are we heading towards end of life care today, tomorrow, NO. There are things that can still be done and she still has a 1% chance. As long as they say we have that 1% chance we are going to do everything we can to keep fighting. I didn’t think we would be here into this week even discussing her fight. And here we are on a Monday, still fighting. We are still playing chess with her medicines to see what we can do to fix her.
Regardless of when or IF we start comfort care, we want her to still be fed. She isn’t our dog we are just putting down. What is wrong with people.
They lowered her fentanyl (sedation) medication down to 50 this afternoon. When people are intubated they keep you on fentanyl to stay comfortable. Having her fentanyl lowered to 50 should make her more awake and alert, which she isn’t. There has been days when the fentanyl was on 75 or 100 and I was able to get her eyes open frequently and she would follow simple commands. Now it’s at 50 and she only opened her eyes once for me. I don’t understand medicine, I don’t understand the human body, I don’t understand my moms sensitive body. She always reacts so randomly to medications. Today was a day she really needed to show she was trending more towards alertness. This will be a big factor in what we do moving forward. They are thinking of doing a sedation vacation tomorrow, lowering it almost all the way to see where her brain function is currently at. She could be fully with it, she could be there partially or she could be totally gone. With liver failure your mind goes. Her bilirubin has been trending down the last two days, which means the jakfi could be working and which also means her liver function could be getting better. Her Bilirubin did jump up 5 today and I don’t know how to feel about it. Mother Fucking Roller Coasters.
Trying To Keep Up
I try to keep up with what’s wrong per day, what medication she is on, what medication she is switching to, what medication she is getting off, what our day goal is, what our morning goal is, what each specialty teams goal is. I try to keep track of what new set backs seem to happen each day and where her other set backs are progressing or not progressing towards. I try to keep track of the million tubes going in and out of her, I try to keep track of when tubes are added and subtracted and then added again. I try to keep track of her numbers and levels throughout her body, I try to keep track of what each medication does and why we do or do not want her on it. I try to keep up on what possible side effects can effect other side effects and my brain is starting to feel like a god damn spider web. I try to keep up with what our good outcomes can be and what our bad outcomes can be. I try to keep track of the clock ticking and wonder if come this weekend we are going to trek her or not. I try to keep track of what each family member feels is right and what each family member feels is wrong. I try to keep track of my dad and make sure he is doing alright. I try to keep track of her appearance and if she physically looks better or worse. I’m starting to loose track…..
Blogging on here helps a bit because I’m not quite sure anyone reads these anyways. My other blog posts are a nice distraction for me while spending my days in the hospital. If I didn’t blog I believe I would loose my mind and be like Alice falling down a rabbit hole. I would become lost down that rabbit hole forever sipping tea with the mad hatter.
My friends text me about random stuff and I just don’t text back. I live in the hospital and when I do get a chance to respond to texts I just don’t want to. I don’t have the energy to just text back happy things to pretend everything is fine and I don’t want to get into what is going on with my mom, so I just ignore them. I don’t often go on social media and I don’t know when I will ever post again. Posting things on social media feels so trivial to me. Other peoples posts just piss me off because I want to have a normal life with a healthy family. I want to post stupid things again that make me laugh. I want to have the hardest part of my day be what filter to use or what hashtag to use. How selfish of me to even scroll on social media when my mom is fighting for her life. I almost feel guilty just doing blog posts. I see through a filter of bleak and when I look at other peoples posts of happy it just makes my sad even more sad. Random posts bring me back to memories of my mom or bring fear to my mind of events that I wont get with my mom, like getting married, buying my first house or having kids. It’s sad but I am so apart of my mom that I am defined by her and her condition. If she has a good day, I have a good day. When she has a bad day, my heart hearts for her.
I don’t want to do a post for prayers or positive thoughts because I don’t want questions coming my way about what is going on. No one can understand what’s going on. I don’t want pity and I feel like I have already over posted about my moms health condition in the past. I don’t want people to look at me and feel sad or feel bad for me. I want to be strong, positive and encouraging. I want people be able to talk to me as a normal person and not as a fragile person who is loosing a parent.
Mama Jo never wanted pity and never complained about her health. She NEVER talked about herself or what she was going through. She just fought it and moved on with her life. She rather talk about everyone else and how their life was. She was more interested in others well being than her own. If her kids were happy, she was happy. Even while sick and fighting for years, she would do anything for anyone else. She never wanted to be a burden on anyone and she wanted all of her kids to continue their life and move on. I’m not sure why I’m talking in past tense. My brain is mush. I fear I am feeling so much that eventually I will feel nothing.
Shame on me for even complaining about life at all, I’m not the one fighting fucking WW3. I’m not the one who is being poked and getting pumped with things every few hours. It’s her who should be here writing a blog post bitching about how unfair life is. I’ve never met a stronger human being in my life. She’s been through more hell than anyone will ever know. Even with her 1% chance, she is fighting like Floyd Mayweather and Tyson combined into one massive unstoppable steroid filled beast machine. She is in critical condition but she is still telling the sickness to fuck off. Even if she is in pain and is sick of being sick, she wont give into giving up. Mama Jo said it is what is and she never let anyone or anything tell her what to do. I picture the sick trying to take over and her soul is still there telling it ” You want a fight, Then I’ll bring a war”
Switching Roller Coasters
I feel like my mind flip flops on a balance beam of reality and hope. People might think I have a split personality when they read my posts. I guess I’m only human and I feel things so deeply, both positive and negative. You can’t be positive all the time no matter how hard you try. My brain goes from being super positive to a super big negative dragon. I seem to type how I feel in the moment of talking about things. Being on a roller coaster of wins and losses makes a persons mind go back and forth between positive and negative. I always try to be more positive and optimistic than anything else everyday for as many days as I can because, you have to fight through some bad days, to earn the best days! I understand she has a 1% Chance but it would be great if maybe this giant roller coaster could even out to a baby roller coaster for a little bit. Can the universe give her some small set backs with positive leaps forward? I feel like it might take her body longer at times, but she will stand up again. Her body might not know how it’s going to win, but it knows it’s not going to lose!