Trainwreck The Empathic Nutritionist / Empathic Mamahood / Robyn Grogitsky-Ramirez / Luna Elva Ramirez / Glenn Ramirez / Atlas Glenn Standford Ramirez - Eyefucking Sociopath Selfie Addict Mother and Closeted Gymrat Pothead Father who use Instagram to Parade their Homemade Homunculus Tard Baby Created by their Refusal to Follow any Medical Oversights

[Ms. Marple]

I only work on the periphery of the medical field. I have seen families when one of their elders experience a devastating CVA or ICH decide not to place a feeding tube and keep the elderly family member on "comfort measures". Basically medicate them as needed until they die. I doubt removing a shunt would be done or needed. The shunt has either failed or is unable to handle the drainage needed, so what's the point of removal?

I think it's actually done a "good" job at keeping Luna alive. It's been five years since her shunt surgery. It seems to be keeping her in limbo between life and death. Removing it would allow the condition to progress more quickly. I feel icky even writing about this, but it's been on my mind seeming how much of a vegetable Luna is.
Are you saying, not feeding her and giving her meds would be enough?

 

[Awwtismo]

Truthfully, I do not know. I have only seen the withholding of food/nutrients with very old people who have suffered a major intercranial hemorrhage or a "stroke" (blood clot in the brain). Dysphagia makes feeding by mouth very dangerous. Their families sometimes opt to withhold tube feedings.
No. I've changed my mind and reread your post. Withholding tube feedings and medication would be enough to end Luna's life. No one can live long without food or water. I feel icky too.

 

[brooky]

Ignorant question from a filthy Leaflander: is euthanasia completely out of the question? Like a big, blessed hit of ketamine and benzos?

I assume this is off the table because Luna can't consent to it, even if it were an option for others in her jurisdiction.

It's icky to think about, but honestly, if she were a dog, everyone would know this was cruel beyond the telling.

 

[Barbarella]

Euthanasia isn’t legal, except in one state, I think. Oregon? Anyway, Luna is on hospice so they could decide to give her comfort care, stop all treatments, therapies, food and water. I don’t think they could take her shunt out, or her feeding tube, but they don’t have to use her tube. They could give her morphine, which would do nothing as she doesn’t have a brain, but Globyn could imagine it was helping as her daughter died.

Useless conversation anyway. Robyn will never agree that Luna is dying and needs to be gently released. Luna can have mold growing all over and be stiff as Oaken’s name, but she’ll never face this reality without a fight.

I don’t feel icky. They were selfish way they brought her into the world, in denial when they ignored her starving for months, and cruel when they put in that shunt to keep her going after being told the truth. She’s a useless husk who can’t see, think, hear, feel, and she should have been a memory long ago.

That said, Atlas putting diapers on that plushie is the cutest thing.

 

[everybody in Portugal]

I doubt she would survive shunt removal even if you could find a surgeon who would agree to the procedure; Globyn had to fight to get it put in and then re-jigged to begin with iirc and didn't she only just barely survive those operations?

That said, her head seems bigger and more misshapen by the month now so I suspect it has failed somewhere along the way and is now just useless hardware in her skull anyway. I hate to say it, but I hope the end truly is drawing near for Buna. The thought of her seizing and abyss-gazing for another few years is distressing despite my conviction that she's utterly unaware of her own plight and not able to process pain or discomfort signals anyway. If nothing else, the boys will have a marginally better life with a dead babby angle sister to remember than a vaguely alive nonsentient spud taking all their mum's attention away from them

 

[GenociderSyo]

 

[TheCakeIsALie]

This study suggests that MCE rarely affects the brain stem:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7703080/

Although it was only 4 case reports based on autopsies. So if that is the case, morphine overdose would work since morphine works in the pons/medulla

Eta: further study

https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2024.1280489/full

The cranial MRI of all 50 children suggested CE, with unilateral lesions in 17 (34%) cases and bilateral lesions in 33 (66%) cases. The lesions were at all brain regions in 15 cases, at the parieto-occipital frontotemporal lobe in 4 cases, at the frontoparietal temporal in 6 cases, at the frontotemporal occipital in 1 case, at the frontoparietal occipital lobe in 5 cases, at the temporoparietal occipital lobe in 5 cases, at the frontoparietal temporal lobe in 5 cases, at the temporal lobe in 1 case, and at the frontal lobe in 1 case. There were 32 patients with lesions in the basal ganglia and thalamus and 4 patients in the cerebellar or brainstem

 

[Thomas Eugene Paris]

Luna is looking really emaciated to me. Similar to how she looked when she was literally starving. Does anyone else see it?

Apologies for the late response; personally, this thread is emotionally grueling and sometimes I need to step away temporarily.

Yes, I definitely see what you're talking about. Luna appears to have lost quite a bit of weight. I first noticed it in photos around the time of the trip they made to Children's Hospital of Orange County in late September 2022. They visited the beach while there, and the images Robyn shared were really grim. The relevant discussion begins here. At the time, there was speculation in the thread that Robyn had tried to increase Luna's weight in anticipation of an additional shunt surgery, but was told during that trip that further surgical intervention wasn't an option. Luna seemed to stop gaining weight soon after that trip, and by the spring of 2023, she was noticeably thinner. Initially, the loss seemed more gradual, but it has accelerated since the beginning of this year and is quite striking now.

It's possible that Luna is slowly losing the ability to digest food. This happens to people who are actively dying. She may not be able to absorb sufficient calories from her blended slop anymore. Feeding her may cause an increase in seizure activity.

Additionally, I suspect that the damage to her hypothalamus has progressed to the point that her metabolism is affected. I've mentioned previously that I believe hypothalamic damage is the reason why Luna doesn't appear to grow.

I only work on the periphery of the medical field. I have seen families when one of their elders experience a devastating CVA or ICH decide not to place a feeding tube and keep the elderly family member on "comfort measures". Basically medicate them as needed until they die. I doubt removing a shunt would be done or needed. The shunt has either failed or is unable to handle the drainage needed, so what's the point of removal?

It's not possible to remove a shunt once it's installed.

This study suggests that MCE rarely affects the brain stem:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7703080/

Although it was only 4 case reports based on autopsies. So if that is the case, morphine overdose would work since morphine works in the pons/medulla

Eta: further study

https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2024.1280489/full

The cranial MRI of all 50 children suggested CE, with unilateral lesions in 17 (34%) cases and bilateral lesions in 33 (66%) cases. The lesions were at all brain regions in 15 cases, at the parieto-occipital frontotemporal lobe in 4 cases, at the frontoparietal temporal in 6 cases, at the frontotemporal occipital in 1 case, at the frontoparietal occipital lobe in 5 cases, at the temporoparietal occipital lobe in 5 cases, at the frontoparietal temporal lobe in 5 cases, at the temporal lobe in 1 case, and at the frontal lobe in 1 case. There were 32 patients with lesions in the basal ganglia and thalamus and 4 patients in the cerebellar or brainstem

No, but as the cysts expand, they increase intracranial pressure and can cause the midbrain (top of the brain stem) and diencephalon to herniate downward through the tentorium. In case it's not clear, such an event is unlikely to be survivable.

One more edit: The linked papers describe cystic encephalomalacia. Luna has multicystic encephalomalacia, which is an even more severe manifestation of the condition.

 

[TheCakeIsALie]

The first study was specifically for MCE. I was trying to find something larger scale specifically for MCE but couldn’t so I tried my best.

We do know she has some semblance of a brain stem. If it was severely affected, she wouldnt be able to breathe on her own nor regulate her heart beat. So my point is I don’t see why morphine wouldn’t work well enough theoretically to you know, cause the end.

Cerebellum in MCE is also spared as well as the spinal cord except for corticospinal tract, as evidenced by radiographs. The cerebellum contains opioid receptors.

Again, all hypothetical.

And to make it clear, I am not talking about using morphine for pain, I am talking about morphine overdose for the purposes of ending someone’s suffering (not that I would actually suggest doing so)

 

[Thomas Eugene Paris]

The first study was specifically for MCE. I was trying to find something larger scale specifically for MCE but couldn’t so I tried my best.

I wasn't contradicting you, so no reason to get defensive. I was merely pointing out that Luna has an even more devastating condition. You can't find any large-scale natural history studies of multicystic encephalomalacia because it's extremely rare.

I don't really think Luna has the capacity to suffer, but withholding feeds and fluids seems like a much less complicated method of euthanasia than trying to overdose her with morphine. At some point, it is cruel to continue to feed a dying person, period.

 

[TheCakeIsALie]

I wasn't contradicting you, so no reason to get defensive. I was merely pointing out that Luna has an even more devastating condition. You can't find any large-scale natural history studies of multicystic encephalomalacia because it's extremely rare.

I don't really think Luna has the capacity to suffer, but withholding feeds and fluids seems like a much less complicated method of euthanasia than trying to overdose her with morphine. At some point, it is cruel to continue to feed a dying person, period.

Hey. No worries! I wasn’t getting defensive and I promise you that wasn’t my intent. It was @Barbarella that inspired my thought process because they brought up morphine being ineffective on Luna and that didn’t seem quite right imho based on what I know about it.

Correct that MCE is rare. And cruel is the perfect way to sum up Luna’s entire existence in a nutshell.

 

[everybody in Portugal]

Apologies for the late response; personally, this thread is emotionally grueling and sometimes I need to step away temporarily.

Thank you for stepping back in and giving us the benefit of your knowledge once again, it has been sorely missed by me at least. This thread is definitely one it's good to take a break from; even being fairly sure Buna doesn't suffer or have any awareness of her predicament doesn't make it easier to see her simultaneously seeming to waste away and also cling on interminably.

She definitely seems to be losing some weight. I had a friend who used to take aloe supplements for woo reasons and would get the shits from them really badly — could the ones Blob was feeding Buna a few weeks back have affected her in a similar way? Ik she's likely to have more of a 6-7 output on the Bristol Stool scale anyway and has been losing weight for a lot longer than she's been having aloe, but I wonder if it has accelerated the process somewhat in recent weeks...

 

[Awwtismo]

Okay, what about the rigidity? That's what I've noticed is striking in very recent photos and videos. Is it because Robyn just can't be bothered to do passive ROM exercise or is it part of the death process? Robyn claims Luna can't sit upright in her wheelchair anymore. I know her hand contractures directly relate to the brain damage (and not using the splints they own). The recent PT videos make it look like the therapist had some success bending her legs and rotating her torso, but little else.

PS: This is why I like Kiwi Farms; it actually can be very educational, you just have to choose your threads wisely.
ETA: New video up showing Luna sitting on an exercise ball and dragging her feet in her standing/walker. Yikes.

 

[TheCakeIsALie]

Okay, what about the rigidity? That's what I've noticed is striking in very recent photos and videos. Is it because Robyn just can't be bothered to do passive ROM exercise or is it part of the death process? Robyn claims Luna can't sit upright in her wheelchair anymore. I know her hand contractures directly relate to the brain damage (and not using the splints they own). The recent PT videos make it look like the therapist had some success bending her legs and rotating her torso, but little else.

PS: This is why I like Kiwi Farms; it actually can be very educational, you just have to choose your threads wisely.

I suspect it is the result of the degeneration of the corticospinal tract as I mentioned earlier. the function of the CST is to facilitate voluntary muscle movement. Specifically, the muscles of the trunk, neck, and shoulders. Clinically, degeneration in that area results in spasticity, clonus, hyperreflexia, etc

 

[GenociderSyo]

Robyn is giving her new aloe vera stuff to the dog and telling others to as well. But Aloe Vera is toxic to dogs from what I can find out.

 

[CharcoalChkn]

Holy crap, after dipping out here and reading ArchivistBex's thread for so long I think I had made myself forget what an adorable baby looked like.

Oaken is so cute.

 

[Naenia Ness]

So she's going to kill her dog with aloe.

Great.

 

[Flourishing Pinecone ❧]

Luna's other hand is now contorting, into dorsiflexion.

 

[Hongourable Madisha]

That said, Atlas putting diapers on that plushie is the cutest thing.

Already he's playing at being a more attentive dad than his own father who refused to ever change him. He's gonna be okay.

 

[GenociderSyo]