manofmanycats: (Default)
I'm kinda tired, so I'm going to run through what I know quickly:

-James and I talked to Lex on FaceTime Friday (and again today), and that kid was SO RELIEVED to see and hear his mom. We were all crying. But then James was chatting normally with her about lizards and pizza and schoolwork he promised he was doing, so once he realized she was responsive... I mean, I don't think everything is totally fine, but he's relieved, and I'm relieved to see him this much calmer.

-Lex had a hard time talking, so she did a lot of nodding or saying "yes" or "no" (and she did make a few jokes). She looked like herself, except for exceptionally pale, and her lips are ringed with a deep blue line... like if someone took a navy Sharpie and drew a line around her lips. With myxedema comas, that's not uncommon, but this is way more noticeable. But she wasn't "scary" (if she looked VERY ill, we wouldn't have done FaceTime is what I mean), and just looked exhausted and like someone beat her up a bit. There are really weird blue marks under her eyes and across her cheeks, too, and her face and neck and puffed up from the steroids she's been on for a week now, but I don't know what the blue marks are about. I wasn't concerned. I'm just pointing out what I saw. But she is still Lex, and smiled when she saw James.

-There's no word on when she's coming home. She finally updated her Insta today, but very vaguely (I think she probably dictated something to Toby, because the post didn't sound like her); I don't think she knows what to say, and this has been traumatic for a lot of people, including her. So she mentioned being ill and let it go. It's probably a wise move; I don't think she wants sympathy as much as normalcy (or something extremely amazing or noteworthy, knowing her).

-Toby did say that insurance is "eager" to get her out of UMMC as soon as possible, which isn't the first time they've let her go early. But "early" may be on time, because we don't know yet when she'll be ready. She has an entire team of docs working on getting her "ready," and home health care is being set up. But I hope they don't let her go early. Last time that happened, Toby told me she ended up back in the ICU and then CCU for two weeks. And it's already been one long damn week as it is.

-But when she does come home, insurance seems to have no issue paying for home health care. Someone will be here for labs, monitoring her oxygen (she'll be on oxygen for a bit), monitoring her temperature, and helping her around the house. She is having some memory issues and issues with typing coherently, so... I just hope that can pass for her. Remembering lyrics, and writing music, and writing here or writing her novels? I don't want her to lose that because her brain was literally iced out and deprived of oxygen. :(

-We're all hanging in, so thanks for the nice comments for all of us. Her brother and his wife are back at their house now that Lex's parents have returned home (her parents had negative COVID tests so they could leave UMMC and return back here safely). James is spending most of his time with them, and some of his time with me. Toby is still at the hospital and appreciates all the comments. Lex's mom said she has read a few emails and is very grateful, and will do her best to reply. We're all really grateful for the kindness here. :)

-In good news, Lex was awake for four hours straight Saturday, which is really great news. And the hypothermia luckily has not resulted in any amputations, which is what docs were worried about, so that is also really great.

-In bad news, she's having issues swallowing, so her meals are mostly liquid right now. Before that, she wasn't eating much at all, and she's looking... bony (steroid puffiness aside, because they have her on a steady IV of steroids for her heart). She's struggled with eating disorders her whole life, but I don't think we knew how severe things were between Thanksgiving and the ICU stay. She's seeing a staff psych 30 minutes a day, which started yesterday, and luckily (for those of you who know about her other conditions and all), the psych knows a lot about DID, so Lex doesn't feel... well, in the past, docs have told her that her alters wanted her dead and sick, and that helped nothing. This doc isn't doing that, and is educated about her DID and when it came to be, so that's the good news in the bad. I wish I had known she wasn't eating, though. I thought I saw her eat enough, but I should have paid more attention.
 
-I'm tired, but Lex is still, well, surviving this. She smiled on FaceTime a few times, made a few little jokes when she did talk, and I'm just glad she came through. We all KNOW she's a fighter, but this was really touch and go. I'm so scared it could happen again. I can't imagine how Toby or James feel. Worse, I can't imagine how much that scares Lex.

-OH, quickly: I talked to her a bit more about the writing competition results and the tribal thing (sorry, I am so new, ha) and she said she was happy for everyone but sad she wasn't playing and "had no way to help" (whatever that means... it was vague). Then she said, "They don't miss me. They were going to kick me out because of votes. I wanted to write things." And then she was all emotional about it. I know she rationally knows it's just a game and that ACTUALLY SURVIVING matters 100% more (and that people aren't mean enough to just kick out someone good because they can, unless that is the game?), but she was sad. I think it's all just been a lot. But anyway, she does miss everyone and misses playing and I am falling asleep here, so... more when I can. I just wanted to pass along what I know. :)
manofmanycats: (Default)
It took about 5 days, but our Lex is awake. She's alive.

I don't know what or how it happened but I'm not going to question it because she is ALIVE!!

Yesterday morning (Wednesday), palliative care and Lex's main ICU doc, as well as her oncologist, discussed the next steps since it had been four days and she wasn't coming through. Her body temperature was still really low. Her oxygen was just as low. Toby agreed that taking her off oxygen and letting nature do it's thing was... you know what I mean. Basically, Friday was going to be it, and if Lex didn't breathe without help, that was what she had requested in her DNR and everyone was ready to honor it. We were all a wreck and her parents were granted clearance to say goodbye this morning. James was NOT allowed to go in (he stayed with me at their house, where I have been this past week) and that experience is not something I can emotionally get into right now because it was hell.

So both her parents and Toby were there this morning, talking to her, reading all of your nice DMs and comments and talking about how cool the inauguration was (it was on TV all day yesterday for her, from like, 6 am to 11 pm) and that we finally have a woman VP, and how Amanda Gorman's poem was like listening to Hamilton (which is something she and I like - we sing it together all the time), and they told her they loved her and that James really just needed his mom - but that if she couldn't and was in too much pain, they weren't mad and understood if she needed to stop fighting.

An hour later (close to noon), she opened her eyes, looked around, and blinked a lot. Toby called the docs in, and Lex was trying to do something with her hands. They took off her oxygen mask (they put those things in her nose instead, the cannulas or whatever?) and she pointed to her throat, indicating she was thirsty. They wouldn't give her water right away before doing a check-up, and she apparently fell asleep several times during the check-up, but she was, indeed, fully out of the coma and her body was just exhausted from trying to, well, keep her alive. They called in an order for physical therapy and occupational therapy, as well as some kind of nutritional therapist.

Her body temp is still very low and she has damage to her body tissue, so she is going to be in the hospital for a bit longer - the hypothermia she is experiencing still isn't gone, so she's not 100% out of the woods yet with her breathing issues. Her face, according to Toby, is very pale and her lips are very blue. She'll be on oxygen once she returns home and will have daily home health care for things like walking, eating, and all that. She also can't swallow well.

But SHE IS AWAKE. And she's said two things. "I missed James's birthday?" (It was back in October, but I guess she is pretty confused right now. Toby said she's been crying a lot because she can't remember basic things like dates and all, and then just randomly cries, but I'm guessing that's normal after waking up?) - that was one of them. But Toby said it had only been 4-5 days and he was nine, just like he was before she got very sick. She also remembered (or heard - I'm convinced she heard messages and the inauguration on TV yesterday and all, she HAD to have heard something) that Trump was gone and said, "Did they pass bills?" I don't know what Toby said about that, because I know she's confused and trying to catch up, but her doctors said that this isn't dissimilar to her TBI - information overload would be too stressful for her. She is having a very hard time recalling basic info, didn't recognize her dad at all, and may have some brain damage. Obviously, it's clear to ME that her brain is working, but it may not be at 100%. But I don't know.

Anyhow, Toby is going to give her her phone soon enough so she can say hi, but that may not be until tomorrow or Saturday. She's not said much or asked about it. He and her family are mostly just letting the docs do their thing and giving her brief updates about how she is, how her friends all are, what James is doing (he is allowed to FaceTime her tomorrow, FINALLY, as long as she is okay tonight!), and good news from around the world. She is still sleeping a lot, and has the cannulas up her nose, but her oncologist said that she thinks the worst is over and that Lex SHOULD come home at some point next week.

So - cautiously optimistic, but she is AWAKE! If she can get through the next 48 hours, that will be the real test. I'm going to talk to her tomorrow when James does (since I'm here with him; her parents are staying at UMMC. Her brother is here with me as well. We're all in the same COVID family bubble, so, I promise we're being safe so no one can get sick and then spread it back to Lex). I'll have more news then about her condition and what the docs/PT/OT say. We're hoping her brain can recover since she's had that serious TBI in the past, and that she won't require any surgeries involving her tissue (one of her toes may be amputated, which would mean using a cane permanently).

But it's good news. She's awake, she's alive, she's made some indication that she knows who she is, she knows she has a son, and I'm just - honestly? Crying. I've been crying since I heard. James is crying, too, so her brother is picking up some pizza and wings from a local place that does curbside and we're going to have a celebration to cheer up James. We've been trying to do things to make life fun for him, but it's been so hard. Now that he knows his mom is awake, though, he's anxious to talk to her, so we have to distract him until tomorrow morning after Lex is assessed. But he is SUCH a good kid. Seriously. He even asked ME if I was okay at one point. I'm almost 30 and he asked ME. Like, what a great kid. He deserves a mom as awesome as Lex.

I'm so glad she's awake. Thank you all for the messages, comments, concern, and love. I know it helped. I KNOW she somehow heard it. We are all so grateful.

I'll update as soon as I know more. Please feel free to add me here - I want to try my hand at writing more, and friends are good! But I'll try to post this through Gary so her online DW friends can see it, and I'll let Toby share the news on Twitter. :) :) :) :) :)

manofmanycats: (Default)
My best friend was taken by helicopter to Shock Trauma in Baltimore this afternoon (Saturday afternoon - I don't fucking even know what time it is any longer) and we're not sure what's happening.

If you know Lex, you know she is many things:
-A genius
-One of the best, if not THE BEST, singers out there
-An absolutely amazing writer who makes people cry with her words
-Despite her brain injury, she memorizes lyrics to every song. Seriously
-Someone who is currently reading three books because reading only one "is what lazy people do"
-A really good mom who is homeschooling her kid during a pandemic because she's worried about his health
-The most honest person I know
-The best person to go to for mental health advice
-Loving beyond words

And that person is about to have a vent shoved in her throat.

I - I cannot.

If you know her, please don't share this to her Insta or Twitter. I know no one will even see this, but just in case, her husband has asked me to keep things quiet. They've had a lot of close calls. Lex has coded several times in the past and still walked out of the hospital. So that can happen again. Her husband doesn't want to scare people until we know ALL the details and I respect that.

But my God, I am so, so scared and I needed to say that someplace.

A.Ham, my first real friend, the last honest face I may ever see - the best of wives and best of women - please wake up. Please, please be okay. You have a legacy, but there is more to it. It is NOT over. Not at all.

TERROR

Jan. 6th, 2021 03:27 am
manofmanycats: (Default)
My friend is dying.

She can see this entry and I'm scared to say this but I love her.

I've never seen anyone like her. I've never heard anyone like her. And I'm not going to ruin the life she has; she knows how I feel. I'm just putting it out in the universe because I am fucking SCARED.

Please, God, let this pass. I'm so new to her life and her condition. I'm so new to HER. Leave her alone?

Hey hey!

Nov. 30th, 2020 02:50 am
manofmanycats: (Default)
Welcome, friendos!

If you've found me, then you know

1)I'm a pet-sitter in the Easton/St. Michaels area - hit me up if you need help!
2)I don't sleep.
3)I'm a writer, but a very bad one.
4)I drink coffee 24/7.
5)Schitt's Creek is the best show on TV and I can't believe it's over.
6)I make horrible Hamilton puns.
7)Cats are my jam.
8)I'm flirty.

Anyhow, I don't expect to MEET people here, but if I do... hi? I live in Small Town, USA, and that sucks for a guy my age (26, so I'm getting old), but my life is good. Or okay.

Whatever. Hi, Friends Of The Internet. Feel free to send cat pics.

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manofmanycats: (Default)
manofmanycats

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