So we discovered she'd been off hormones for 2 weeks - a mixup due to her being constantly about to be discharged prior and this fancy NYC hospital apparently only has horse piss pills which btw wtaf, as well as continually losing any meds they're given. A perfect storm of 'lets just do the shot at home'

Refused to sit around for 5+ hours hoping a cis doctor would think hormones are important to health and had to say fuck the police and sneak patches onto her. Was found out a few hours later and an attempt was made to reproach our behaviour but I think they folded after trying to run HRT up the chain and finding how incapable their own system was in that regards.

Her ox level improved by 5 points within 2 hours off the back of it.

night two of sleeping in the ICU, making my little jester nest in the corner. Had another good littlestep, they've taken the ventilator ox concentration down by another 10%, and shes still staying stable and high only losing one point on the back of it.

Two more of those and she'd be breathing normal air.

the main doc in charge is a big and imposing guy with a morbid sense to his appraisals. As someone you might expect in the role of lead in the intubation ventilator ICU wing of the big NYC hospital in 2022.

He very specificaly doesn't want to give false hope so instead tacks a too far in the opposite direction in more of a hope crushing way.

So i am pushing hard for the nurse team to be able to show him positive improvements each day that we're able to keep hope going for ourselves and therefore keep providing to mira.

on the hormone front, just a few hours earlier she wasnt able to tolerate even a 5% reduction without dipping into into the 80s for saturation.

now she just took a 10% reduction and she saw a dip of 1 which shes slowly regaining by the looks of it.

trans girls dont miss your hormones.

i looked online for "hormones and oxygen levels" and you can imagine the smattering of vague studies being like "uhh yeah sure, they do something, something about blood cells in the lungs sure who knows yknow"

now i will say this, having a headsup display of all of your loved ones vitals is ultimate speedrun strats. I can glance up and know twelve things about wheres she at. This should be normal.

scary bear doctor: I dont want to give false hope, theres been a little improvement today but this is a desperate situation

positive bear doctor: oh im so glad, this is great news shes doing so much better!

choose your own medical adventure

late night funtimes playing "the nurse game" but on hardcore mode with fluid dynamics.

*press button - 20 seconds nothing
*bed alarm starts going off as her ox is crashing - immediately appears*
"Hi shes choking on liquid"
>doesnt say anything comes and just does suctioning and leaves, ox barely ticks up.

*press button - 30 seconds nothing
*bed alarm starts going off as ox is crashing again - immediately appears*
"Hi shes still choking on the liquid and her ox is crashing"
>Ok ill call Mfmhmrm and she can take a look at it, leaves

*wait for Mfhm?, 10 minutes, ox still low press button 5 minutes nothing, go walk outside the door and turn to her sat next to the door and say hi can you come in for a sec please*
"Hi so shes still choking on liquid, i think its because these two breathing tubes tube are now vertical and before they were hanging down below so liquid was condenscening in them as like a reservoir and now its just pouring back down into her mouth and throat?"
>yeah i can move that down

ox starts climbing back to normal, no more choking.

>so im just going on my break and ill let the nurse taking over whats going on
"yeah i bet you are going on a break"

her first instinct was like ok shes not tolerating this ox concentration we need to up it back to before and i had to stop and say no she was tolerating if fine for the last hour, its just been since you turned her 5 minutes ago.

hotdogs karen with a knife

i am advocating the shit out of this nightshift

new break nurse is good.

Ok, its been A Night but my babygirl is sitting pretty at the end with 96 SpO₂ at 40% O₂ conc from the vent.

Got scary bear doctor coming round soon no doubt and then palliative care meeting in the afternoon so its going to be a bumpy ride with tears and fears but im so proud of her getting to this point.

Scary Bear Doctor seems to subscribe to the school of thought that giving patient families any sort of hope is overall bad in these sorts of situations where its "desperate" as he has referred to our case.

I am of the opinion that without mira i am broken and lost beyond repair, a little hope at this juncture only helps me get through these days and function enough to care for her. Nothing could make me more broken than losing her will, hope or no.

for intents and purposes of this hospital stay we are blood sisters, and i have inducted her into my family history when explaining why shes american and im british to all the nurses.

trying to explain the intricacies of queer chosen family, especially a trans big sister and the many facets that will entail is not on the cards.

its one of the hardest parts of this last year, even to straight friends i cant get across the fullness in conventional language.

ok they're switching her off hard sedatives to something different which will allow her to be more in the world bit by bit. Her ventilator ox is down to the minimum level and shes still stable so thats all good, moving in the right directions.

scary bear doc didnt refer to it as a desperate situation this time which is a win.

shes also breathing over her ventilator onher own occassionally because shes a hard headed badass who wont listen to authority. naughty girl tsk tsk.

That sharp dip with the white part in the first bump turning it into twin peaks? That's Mira managing to say fuck this through two heavy sedatives trying to stop her doing exactly this. They actually gave her more an hour ago to try to explicitly stop her and still she says fuck this.

So we're out of the woods regarding stage one where shes sedated and intubated, she passed with flying colours, her oxygen needs are now back down.

so now we're moving on to stage two with them preparing the groundwork for her to come off intubation so they're reducing sedatives and replacing them with other meds to tackle the parts that the sedatives were blocking like blood pressure etc.

"things are moving in the right direction" is the touch phrase of the moment. Its going to be a day or two of the two sedatives being ramped down so she'll be adjusting back into reality. Meanwhile we're being reminded things can always go wrong along the way, this is all very fragile and no one can predict the future of what her needs will be.

The big sphincter tight moment coming is that we will only get one shot at her coming off the vent, that *has* to work and if not then there wont be a plan B at that point. Mira has in the past been very clear about her limits of what she wants and the only active medical options left were vetod off the table a while ago.

So getting her off the vent and stable is very much the world series of all ball games and im gonna be here along the way to just make sure shes awake, aware, ready and has access to everything she might need to keep Babe Ruthing this shit as she has so far.

as for me, im still living in her icu room out of the small backpack i flew over with. Night 3. Callan watches over me in the afternoon / eves while i curl up on a chair and crash hard, but from 10pm til 3pm-ish im the Ben Stiller of this quiet museum.

also its the same night shift as last night, so we're back into the world of "this isnt working and we dont know why" chucklebrothers routine.

I am now very used to the change of voice tone they have when they're trying to say theyre messing up something to another staff member without me hearing. Like its ok, this stuffs hard, just ask for help and get it sorted.

Today with our meeting with palliative care was a real eye opener of realising that so much is eggshells around here because of the fear of lawsuits. Took me ages to realise thats why doctors were being so careful with saying anything potentially positive.

yeah as assumed, woke up from a nap to catch the night nurse messing up fluid suctioning, her ox dropped steeply to mid 80s, and the nurse was panicking and sedated her and then upped her NO. Neither of which were the cause of the issue, I kept on saying the suctioning was the cause and she must have been moved to a position or have fluid somewhere that is reducing her air intake. She called in a secondary.

I said the same to the secondary, they both assured me that "the pressure shows full so shes getting all the air" yeah right so why is her ox down 5-8 points and not coming back? The primary states its likely the NO as she had just taken it down before the suctioning. I'm tearing my hair out in silence.

respiratory nurse arrives i go through the same thing, again no the pressure is fine so its fine "there's a lot of moving parts at play here" I start to get agitated and bite my tongue before i swear. "it must be very upsetting". FUUUUUCCCCCC

shift changes

I bide my time, the doctor and team do their morning rounds and they're noting her ox is down and her absorption is down too plus shes more sedated than they wanted. I repeat the issue and my feeling on the matter. They reduce her NO, reduce her sedatives, no change. They adjust Mira and her ox begins to climb back up 5 points within a few minutes.

Just want to say here thank you to everyone who donated to Miras funraiser over the months. It's helped cover so much including this ICU visit in ways that just wouldnt be possible otherwise or would have meant days of stress, delays and hard choices. Instead i was able to be here almost immediately across the world so i can be in the room 24/7 which, for a trans girl fully sedated in the ICU you can imagine the issues that can arise without an advocate present day and night.

So all of yesterday was about her sedatives going down and her clawing back bit sof consciousness.

There's a balancing act going on between her being conscious and her blood pressure (ie her being uncomfy from a f'ing tube down her throat and in pain) so they're having to give her small bumps to help keep that from shooting through the roof as her brain adapts to being back on the ground.

She's wiggling her toes, moving a leg, squeezing hands and starting to move eyes and focus on things. It's coming slowly and then fast but at the same time its being a bouncing landing as her BP keeps on shooting up and they have to sedate her a lil back down - shes gotta be back in the room and aware for the vent to come out, but at the same time her BP has to be stable enough that its safe and those two are entwined a little atm.

Hopefully today they're going to put her on something that will help keep her blood pressure down more throughout as the final parts of the sedative run out.