I made a post at the beginning of March begging for prayers, then updated a few times about the rollercoaster this has been. My last post about my mother dubbed "Grandma Anon", I said she hadn't woken up from a good day she had and well, we found out last Friday it was because she had suffered another complication.
TL:DR we need more prayers for her healing, she suffered major damage and we have a long road ahead of us.
We met with doctors last Friday that gave us a gut punch of a prognosis. Up until this point, we knew my mother suffered the mother of all brain aneurysms and was lucky to be alive, but she had only sustained damage to one spot on her brain. We figured we could work with that. But her most recent complication caused a lot of infarction, meaning it died off a lot of her brain. They told us she would likely need 24 hr care and not be able to feed or dress herself. Then, they tell us that it's up to us if she wants to live like this. They gave us the option to take away her life giving resources like feeding tube and water.
Now, my Mom is 73. She's not exactly really old. She was full of life and spunky, pretty decent health, very independent, although pretty dependent on my dad as that's how their relationship is. But, to take away her life because she would be severely disabled seems super evil to me. It felt so wrong in that room that they even suggested it. "Would your mother want to live like this?" They kept asking. And they just say it's very likely she'll be severely disabled, they couldn't give us any stats to back it up, etc. The term they kept using was "we'd be very surprised if she got very much better." At one point I directly asked the nuerosurgeon, "Are you telling me my mother is only going to shit and piss herself the rest of her life??" He seemed startled by that question and admitted she would gain more abilities.
We're Catholic Christian, pro-life. So we know and my mother knew that suffering was a part of life, and in many cases it's a mysterious blessing. I mean of course we don't want our mother to be a drooling catatonic disabled person, but we really don't think she will. Even if she's aware and can talk to us but can't wipe her own butt, we're ok with that. She's already woken up and talked to us and even though she's not consistent with a lot of things, we know she just needs time to heal and form new pathways. Her life has value. Period.
It sickens me the amount of people who probably hear such a thing and just say, go ahead and let them die. My own brother said that in the meeting. He since has come around and realized he fell for their bullshit.
My family is also researchers. And my sister found a scientific article about this prognosis model they follow when a person has a severe stroke and it verifies what I had felt and thought. The neurologist and ICU team don't follow up with the severe patients long term. They are also very pessimistic when it comes to a bad stroke, nurses are even more pessimistic, which we saw. They're also not trained in rehabilitation, they just treat and do life saving surgeries. They are just looking at stats. And these stats shove in the fact that many families take the easy road and take away their life sustaining treatments. Or the person is real old so they don't take them to a good rehab facility, just kind of half-ass it. So when they say a certain percentage of people die from a severe brain aneurysm after a month, it's because a certain percentage of families decided to not wait and see, they allowed them to die.
I'm also having trouble not being angry with the ICU team. When my mother had her good day before this last scary episode, she was very alert, talking doing very well, doing commands, had pretty good ability, and they told me she would be out of ICU in a day. She was still in the danger zone for the vasospasms she had just suffered the week prior, which they had treated very quickly. This time last time though, they took 3 whole days to discover it and once discovered, I think the damage had been done because they didn't do any treatment other than raise her blood pressure. It is kind of hard to catch a vasospasm with a scan because it needs to happen during the scan. However, the way they discovered it was by putting dye in her blood stream, which didn't happen for 3 days. In that time, my mother suffered worse damage than the original bleed. They kept reiterating in the meeting how severe her original bleed and subsequent complication was and I just feel like they didn't use much caution after that first storm had passed. After her good day before the damage, they lowered her blood pressure while simultaneously cutting off the flow of her drain, which was draining her spinal fluid. They do that to make sure your body can reabsorb spinal fluid naturally, otherwise they have to do another surgery. It's probably standard procedure with normal cases. But with my mom, it caused more pressure and less blood flow. Which is what causes vasospasms in turn causing her to have brain damage. And honestly, I don't even know if it was vasospasms because one doctor told us he didn't think it was, so there was some disagreement amongst doctors of what had happened. So to be honest, I think they messed up. Because when I incredulously brought up how most of her damage happened in that time, they seemed very defensive in their strategy to find out what was happening. OR, perhaps I just feel the need to blame someone.
I guess I just need to vent to strangers on the internet. And request more prayers. This has been hard news to tell people as we almost feel foolish from having hope she can recover more than what they predict. People in lab coats can do that. But, we're strangely optimistic and have faith and hope she can surprise these doctors and nurses. Maybe even walk or roll into that ICU and do her movie star waive she always liked to do and say "remember me?"
Please pray for her healing. She could encounter other complications to other organs or something could else happen. We are putting a feeding tube in her stomach until she regains better ability to swallow. Pray for us to remain strong and faithful.
Yes. I will pray for her daily. And you are doing what is best for her. My sister (remember me telling you) was in bad shape too. She was 48 at the time. The surgeons gathered us all into a conference room and bluntly stated what they thought would be her outcome. They said she would 'possibly' never talk, never have a memory, be bedridden, need continual care, lose all her faculties and perhaps be on a feeding tube. Then they asked us would we like her to quietly pass on. Her only son agreed to pull the plug. But I spoke up and said, "She was my sister before she was your Mother. So NO, we are going to give her a fighting chance."
She is in a wheelchair and paralyzed down one side, but she gets up occasionally and holds her balance long enough to have a quick dance. She cleans her own house except for her ceiling fans which she has her son clean. She can talk, she has memory of everything, even what happened to her. And if we'd have let her go, she would never known her grandchildren and her new great-grandchild. She enjoys her life and lights up the room to let everyone know how precious life is. So I'm glad I said what I said to her son that day. And all my siblings and his only sister agreed with me. We left it at God's feet. And she is doing well even after having lost her husband on March 16th.
Dear Father in Heaven, We pray today for meekturtle's mother who is in need of your healing power. We pray you mend all areas of her body and mind that need healing. Give her the strength she needs to fight and the spirit of your joy of living to help her heal. We have not because we ask not, you said dear Lord. And so Lord, today we are asking in the name of Jesus for her complete healing. We thank you and praise you Lord for all things as we remember that by his stripes we are healed. Bless you Lord. Amen.
Thank you so much for telling me your story and for your prayers! So many people tell us that the doctors told them one thing then they turned around and surprised them.
That was another thing this article my sister found went into. Those who live on with disabilities, when asked if they were glad they were alive, they always say yes. So when they ask "would your mother want to live like that?" The answer always is yes! It's called the disability paradox where those who are disabled are actually happier than those who are not.
Amen. And my sister lives each day like it is her last. So I will continue to pray for your mother. She sounds like a great lady. God bless and keep us updated.
She sure is. I'll never forget the day we were driving back from somewhere, she was in my passenger side seat and she goes, "have you heard about Q?"
That was in 2018. It took me a little bit to look into it but it got my curiosity rolling. As a self-proclaimed researcher I wanted to find the direct source of these Q posts and that's when I discovered the first front line researchers, sharing images of the posts. If it hadn't been for my boomer mama I wouldn't have known about it.
Ah! So your mama is a boomer too. Yes, nothing much gets past us boomers. Kek!