Posts by Kenneth Wilson6

Amanda Anderson87 said:My deepest condolences, 🙂

Thanks, Carl Kern66—wishing you nothing but the best.

Hey everyone, my mom passed away on March 16, 2014—exactly 16 months after her surgery back on November 19, 2012.
From late February until she died, everything just went downhill fast, despite everything we did—and I mean everything, from the Dex to the Mannitol and all the medical care...
First, she lost feeling on her left side, then her speech started failing, then breathing got harder, and right before the end, she slipped into a coma. She wasn't in any pain, at least that's what they told us.
I just want to say thank you again to all of you (and honestly, God forbid anyone else has to join this group).
Angela Wright, a huge thank you to you specifically for everything you've shared with us. Personally, following your experience made my own journey a little easier and a bit better. Truly, thank you.
I wish you all nothing but the best in life—I hope nobody ever has to go through this hell again.
Best,

stormyfox19 said:preventing pressure sores:
change their position often—switch from one hip to the other, then back, or onto their side or stomach if they can manage it—(honestly, it just depends on how much the patient can actually move).
massage the whole body with some hydrating cream or lotion (even the cheap stuff from Walmart works fine) two or three times a day. It doesn't have to be some fancy professional massage—just rub the lotion in to get that circulation going and help skin elasticity.
If the patient is up for it, it’s probably good to try sitting up in bed with their feet touching the floor.
Watch those heels—make sure to use a richer cream there (like Nivea face cream, the blue tin).

Thanks, stormyfox19. I'm trying my best to keep up with all of that.😢

We finally grabbed the chair and ordered the mattress, but I totally blanked on the whole thing about renting equipment—seriously, this is why I need your advice more than I admit. I’ll start asking around first thing tomorrow.
There was honestly no point even bothering with the medical board meeting (or whatever they call those consultations at the clinic)—they basically told us we're on our own now. It feels like we've been left to figure everything out ourselves. Mom is getting worse by the day, and frankly, we're all just hitting a breaking point. For now, I’m managing to keep her moving and stay on top of hygiene, but as for the rest... well, starting tomorrow, the home health nurses will be here. They’ll handle the exercises, the massages, and all the other stuff I either don't know how to do or just can't manage.
At this point, I really only have one wish: to make sure we aren't causing her any unnecessary pain and to make things as easy as possible for her.

Angela Wright said:If we're talking about edema caused by CSF buildup, they can actually drain it mechanically. You really need to sit down with a neurosurgeon about this. They drill a tiny hole in the skull and use a syringe to drain the fluid—it provides instant relief. Honestly, the only reason they don't do it more often is just because of the practical logistics involved.
I'm not sure where you're located, but based on how you're writing, I'm guessing you might be out in the Midwest or something. Look, I know there are hospice facilities available, and honestly—I think it would be best for both her and you to look into getting her settled there. Your mom needs 24/7 care, and if you aren't able to manage that level of constant supervision, hospice is the best move for everyone in the long run. Just a heads-up—this kind of situation can drag on. My own mom was bedridden for over a year from the moment she started losing mobility until the very end.

I’m living in Chicago. We’re heading to an agency tomorrow to talk to them about hiring 24-hour nurses—mostly because Mom won't even hear the word "hospital" without losing it. We'll see what the medical board tells us, and I'm going to ask specifically about the edema (maybe that's why they're pushing for a CT scan?). Also, can anyone tell me the best way to prevent pressure sores?

Huge thanks to Angela Wright for the reply,
I’ve basically come to the same conclusion—things have clearly taken a turn for the worse once there's no reaction to the mannitol or the dex. Now the real headache is figuring out how we're supposed to manage all this at home. I'm working during the day—got a 2-month-old baby at home—and my brother handles the night shifts since my sister-in-law is eight months pregnant. So, I honestly don't know what the most humane move is here. I get this sinking feeling we're just prolonging the inevitable because we aren't medical professionals or anything.
We're heading back to the medical board meeting on Wednesday, so we'll see what they have to say then.
Thanks again.

Hey everyone,
I really need to give a huge shout-out to Angela Wright—her experiences and insights have been a massive help to me. About 16 months ago, my mom was diagnosed with a Grade IV glioblastoma. During surgery, they actually managed to remove way more than the doctors expected, and honestly, things were looking up for a bit. She could walk, talk, and basically function normally. We went through chemo and radiation at the same time, and even the regular MRIs showed one part of the cancer had completely vanished—the surgeons were actually pretty surprised by that, especially since she was still on her sixth cycle of Temodar back then. That was back in May 2013. But then, by September, the MRI started showing changes, which was confirmed again by an MRI earlier this February (she hadn't had any treatment between those two scans besides Tegadol). Seven days ago, a medical board was supposed to decide if we should push forward with more chemo, but she just wasn't doing well that day—it was the first time since the surgery that she struggled to walk and seemed so slowed down. I feel totally helpless in this situation. They sent us home with instructions to give her two doses of dexamethasone in the morning and one at night. But she’s just getting worse. She’s lost use of her left side now—which, I guess, the doctors did warn us might happen when we were deciding on the surgery—and they started her on Mannitol too, but nothing is helping. It's just downhill from here. We’re heading back to the board in three days, but I don't have much faith they'll approve more chemo.
Is there any chance for a miracle? Like, can someone actually bounce back from this? I'm trying my best to stay level-headed and look for practical advice.
Sorry if I'm rambling too much here—thanks in advance for anything you can share.