TODAY IS THE DAY. That surgery she chickened out of that threw my summer classes for a loop and Alex and Scott's schedules is HAPPENING

We are both happy and terrified, high hopes but. Very Worried

Today (I think?) is surgery round 1

There is another round 2 in like... a week or two?

I am home house/pet sitting while my dad and Katie are in Durham

She is getting a metal rod put in her neck so that her neck sits up right

At the moment, her chin is like constantly on her shoulder and it takes a lot of effort to raise it. She also just leans hard to the right and all of this is putting awkward pressure on her lower body/joints

So the idea is If the rod straightens her head, then the rest might just work itself out since she won't be leaning so hard from the top down

They offered to do a rod for her entire spine but... that would delete any upper body mobility so.. neck it is for now

I forget the name but like her spine is deteriorating but not like ... all at once

So there's some scoliosis involved?

It sounds as bad as it is

She has a brace and such but like... that is uncomfy and even more so for someone who deals with daily chronic pain

ANYWAY

Here is where I shall update. Alex is down in Durham with them starting tonight and I think that will help Katie recover from round 1

Scott is anticipated to visit over the weekend with Jenny for at least 1 night

Munchkin has threatened to fly down to visit when Katie is home recovering but like. That might be Thanksgiving, we have no idea

Current plan is basically a ~month in Durham (Duke) and then she comes back home but not Home home but like an in-patient facility with UVA that's 15 min away

For the PT stuff and general recovery (my dad and I can't handle it)

And that's anticipated to take 6-8 weeks

So we're looking at a potentially 3 month long ordeal

When I said HIGHLY ENCOURAGE MUTING I meant. This might be a 3 month old plurk at one point that I'm still updating just so I can scream somewhere with the ups and downs

You have been warned

send Katie my hugs

oh it sounds like Katie has the same problem my godmother has, she also has in her spine to straight her back

Yeah, it sounds fairly common

So today's update, she's in the ICU, they gave her much pain med. She's recovering well so far, surgery 1 went pretty good

They have her in a C... brace, I think it is

Just so she doesn't lull her head at all

I'm sure it's as uncomfy as it sounds. But so far so good!

Alex is there giving everyone updates, my dad has not said a word in our group chat and turns out Munchkin is doing a flight down tonight!

Katie did not know Munchkin would be going to Durham at all so that will be a good surprise for her to have

Scott and Jenny are intending to visit on Saturday and leave Sunday. With Jenny being a nurse and Scott's work with the brewery, their schedules are the worst to coordinate

But they try

Jenna (Alex's wife) is also going down to visit Fri night - Sun morning

Sam and I are the only ones not there. Nothing to do with not being, ya know, the step kids. More just Sam's work and me being designated house/pet sitter lol

I mean, we are the step kids but not the kid-kids............. you get my point

I lied it's not work, Sam has a close friend's wedding this weekend

But either way! Sam's planning to visit once Katie's back in Charlottesville so better late than not

Alex has reported back to say Katie is having a really GOOD day. She's been walking and eating fine and chatting away

EATING after neck surgery. She passed swallow tests yesterday

So this all sounds really good but I also know Katie and I know she tends to put on a show for her kids

She probably is having a good day, but it might not be as good as Alex assumes. But we can only hope

even if it isn't as good as she's making it appear it sounds like there's definitely marked improvement?

Yes. Just the eating part is very good news

Katie's second surgery was today! This one was way more complex, it started at 8am and only just finished around 3

Alex and Munchkin are at the hospital so we're waiting for them to give us news on how she's doing

She's going to be in the neurology ICU for the time being. She started there in the last surgery before they could move her to the "normal" ICU

Basically the difference is how frequently they check in

If neuro, they check in every 20 min, if normal ICU then every 40

Munchkin is heading back to Boston on the 1st, Alex is heading home on the 3rd. So my dad might be going back down to Durham over the weekend but no plans yet

It really just depends on recovery time now

GOOD NEWS: She's doing really well with recovery. They put her in neuro but she's not even in an ICU now so that's REALLY good

They took out the unfun drainage things so she can sort of move her upper body a little better. They've had her practice walking

BAD NEWS: surprise 3rd surgery?? We aren't sure. We don't know when or even if it's needed but the doctors gave a HMMN and we're all like THE FUCK YOU MEAN HMMN???

I told my dad to go down to visit for the weekend but he is now dealing with his own health debacle. He got some bloodwork back and his kidneys are in stage 3 of failing (or something like that, I am oblivious to this)

So he's stressed and depressed and he has a whole lot of phobia with doctors and hospitals (probably because of my mom, one can only assume) so... I can't convince him to visit

Meanwhile, Scott could've visited but his dog uhhh... like. Look. I love Arlo but he is a rather nervous and potentially aggressive rescue pup and

Well Arlo bit someone at the dogsitter's and he was also behind on a rabies shot so Arlo is now in quarantine with a bite offense

Arlo would still be in quarantine but Scott and Jenny are visiting him daily to help with his extreme anxiety

So neither of them want to visit Katie over the weekend so

Well, hopefully she'll be okay despite the lack of familial support. My dad's going to call daily, all of us are constantly demanding updates so maybe all of this is okay

We don't know when Katie will be able to come home yet, everything at this point is Wait and See

They gave estimates but they also threatened a 3rd surgery so who knows

jeez that's all so much at once

i hope the third surgery is not necessary

also i hope your dad is ok????

He's okay for now, I'm making him talk to a nutritionist

We won't know about the 3rd surgery until Monday, so she either goes home Monday or gets news about the next surgery

Whoa kay today was rough

Katie's blood pressure was at 80/30 (as in low AF)

So they had to take her off all her pain meds, give her a blood transfusion and they want to keep her for longer for monitoring

The issue with the pain meds is she'll start getting big withdrawal symptoms and that gets messy in a hurry so we're hoping the blood transfusions get her back to a stable blood pressure

Theoretically she might be coming home on Tuesday

Just depends how this goes

She has aspiration pneumonia so now she's staying until at least Wednesday

They gave her antibiotics but there's currently no need for any oxygen assistance (thank goodness)

My dad is STRESSED

But there's not much we can do

3rd surgery is just not even a thing being considered at this time

Hnnnnnngh

Katie might have a blood clot in her leg, they took her for xrays, waiting to hear back

Remember how I said Katie usually puts up a very brave face in front of her kids

And it always backfires when they leave

Gestures to Alex leaving on Friday, gestures to the terrifyingly low blood pressure, pneumonia and possible blood clot

Katie failed her swallow test (yesterday, it's been crazy I couldn't update). Might just be swollen from the pneumonia but they have to do a feeding tube for now. So now she might come home Friday? We don't know.

Also good news, no blood clot was found! But still dealing with everything else

Now it's maybe Monday for her to come home, feeding tube is likely to stay for up to 6 weeks. They are pretty positive the pneumonia caused it

SHE IS depressed. To no one's surprise

And it took to get to this point for my dad to be like Oh, maybe I should be staying with her

He's leaving Saturday and fingers crossed he'll be back with her Monday

I'm a little frustrated because I feel like I saw this coming a mile away and even though I told my dad he needs to be there as much as possible, my concerns were ignored

But at least he's going soon. Hopefully she doesn't decline more before he gets there

So my dad got there yesterday

AND SUDDENLY

Katie can go home Monday

Instead of...... Thursday which is what we were told on Friday

Katie's health is so dependent on the proximity of loved ones I just. Why does no one else in the family see this? It drives me crazy

As a step-child I don't really count myself as a worthy person for this proximity issue. When it's just her and I in the house sometimes when my dad does little trips, I can keep her like. Afloat and make sure she doesn't fall asleep in weird places (don't ask)

So maybe I'm useful to keep her at a baseline but like

She cannot be left alone. Her health divebombs every single time

uuuuuuugh. At least she'll be home soon

Reviving this. WE HAD A GOOD WEEK AND THENnnnnnnnnnnn

So Katie got home last Monday

She can kinda waddle around, it's been okay. My dad has engineered a way to do the feeding tube stuff and it's been fine

Then this morning Katie's stitches, idk. FAILED??

Her neck was literally open, we could see the rod in her neck. Sorry if that's graphic? I am trying to keep this more pg

But she's now in the ER and I'm at home with the pets again

She... squirms a lot in her sleep, so I have a feeling that's what did it

.... It's been an eventful morning

Just to clarify, she's fine for now

But uhhh this could get bad so ya know

oh god i hope it's an easy fix

Me too. I'll update again when she's home or at least when I get more news

yes plsss

oh yikes. i hope they can get her sorted out without any complications

I'm sure it's up there in the oh shit category that she won't be waiting in the ER long at least but I haven't gotten an update in an hour (when they reached the ER)

Even if she got a room/was seen to right away I still might not know just cause... chaos. But I am assuming (for sanity's sake) all is well until I'm told it's not

oh geez 8( I hope she'll be okay, glad she's doing fine for now

jfc how scary

It was not the morning we had expected

no, I imagine not

My dad's home, Katie is staying at the hospital for at least a couple days. They have to check inside before they can stitch her back up... it's a whole thing

Without too many details, the stitches failed about....... 8 inches

WHICH I THINK IS ...... THE WHOLE THING SO ????? the fuck

My sister-in-law works at the hospital so at least Katie will have some ongoing company even if my dad has to be home

We did not tell Katie we could see the rod or her bones but uhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

She got the hint lol

Apparently Jenny, a NURSE, made a face at it and that was enough of a tell even after my dad and I gave her the best You're okay but hospital time poker faces

that is a little horrifying. and sounds like it should not have happened to that degree???

YEAH WE ARE.... a whole confusion

I can understand knocking stitches loose if she's a sleep wriggler but EIGHT INCHES AT ONCE.......

that sounds like the stitches were poorly done

It may have been undoing for longer and it's only when we saw blood that we were like OH. OH

Idk. I am not the helper to get her dressed or showered at this time.

There was blood on her pillow, that's how we discovered it this morning when I went to get her feeding tube set up

Either way... we'll probably call Duke later and let them know what happened, if UVA doesn't beat us to it

UVA likes to dig at you when you go to other hospitals. It's weird. Seems unprofessional but whatever

I don't really care so long as they patch her up and better than the last time

And now that the immediate danger isn't present.. I need a nap but, thanks for bearing with me guys

I'll update again whenever we get more details on stitches or what happened or... when she'll be home again... all of that

OH MY FUCKING GOD. They are transporting her to Duke, they won't help her at UVA

Ffffuuuuuuuuuuuuuuuuuck

They have to do tests to make sure she can be transported but likely tomorrow they'll send her over

It's like. A 3-4 hour drive

Longer maybe, I forget

My dad's devastated. I'm sure he was ready to fist fight the surgeon who gave the news, knowing him

I tried calling Alex but she's probably working right now ugh

So. She WANTED to go to Duke, apparently. She chose Duke because UVA didn't want to deal with her before and she doesn't trust them. So............ okay. Fair. Fine. That's not as bad as UVA booting her over which is what my dad made it sound like on the phone

My dad would be one of those INCREDIBLY unreliable narrators, lemme tell you

Alex said they'll have to like....... vacuum seal the wound because it's not the stitches fault. (She hasn't seen it mind you but she's a nurse so we trust)

Katie is bone skinny. What likely happened is there wasn't enough fat to help mend the wound so the stitches could only ever do so much without her body able to physically do the rest

This vacuum strat will take weeks. We're all annoyed she'll be several hours away and not near family

Geez I hope she's home for Turkey day

Alex and Jenna are coming to visit this weekend, it's Jenny's birthday so they'll be here but no idea about Katie

More updates LITERALLY AS I TYPE THIS more phone calls fun calls

Katie has to talk to a social worker, they're worried about the transport. It sounds like UVA doesn't actually wanna let her go now. Go figure

Yeah if she's too fragile a patient, transport could fuck things up and they would be liable

Yes.. she is very fragile at this time. I mean literally a hole in her back along her spine. A pothole could paralyze her

ffs I'm making light, I know. But if I don't I'll lose my mind from stress so please don't mind the poorly placed humor/anger

You're good, you're doing what you can

but I'm not shocked UVA wants to keep her

Yeah, I am surprised Duke was even an option.. to be honest. Her surgeon is actually out of town for a week. There's so little Duke could even do for her until the surgeon gets back. It makes no sense to go

My dad's staying at the hospital until they know where she'll be tomorrow. So anticipate yet another update once that's sorted. Hopefully there's a decision tonight, if nothing else

She's staying at UVA, Jenny stepped in to talk her down from going to Duke.

Even my cousin started getting involved lol which meant my uncle was involved

Cousin is a neurosurgeon at UVA and uncle is also neurosurgeon just at his own practice in PA

So that was the end for Katie's argument to transfer

oh god well I'm glad that got sorted

but weeks for the vacuum... 😬

I guess it's because the wound was open and she can't physically close it with stitches given her lack of body fat so.. idk how it works. They might not do that, it's just what Alex assumed they'd do.

Alex is coming this weekend with Jenna for Jenny's birthday so we'll all visit Katie in the hospital then and Alex can probably make some sense of what the plans are

And just as I say that, the hospital calls. She's in critical condition in the ICU. She's also just panicking so my dad is going over now while they run some tests. They need to do an MRI but she's too stressed so they'll have to knock her out for it .-.

Fuck this. Leave Katie alone, universe istfg

noooooo wtf

my best well wishes for her, i hope she stabilizes :c

More updates: Surgery to close the wound (again) is tomorrow afternoon. My dad's planning to spend the whole day at the hospital. Katie has been swinging from deep depression to manic happiness so we're trying to have someone there as much as possible as some kind of stabilizer, at least for emotions

Alex is going to come asap now, she put in for FML and as soon as it's approved she's coming over, Jenna still can only come for the weekend

Katie's in the ortho spine unit, my cousin (also Kate because we can't have enough similar names in my family lol) works neuro spine, they are alike enough and close enough that Kate (cousin) can check in on Katie and stay up to date as well

In the times when we can't be there but she's working

Kate's fiancé works anesthesiology so like. You can't swing a dead cat without hitting a family member at this hospital lmao

And then Jenny (sister-in-law, also nurse) doesn't work in the unit but can also help check on Katie

Staying at UVA is just. Better. I am glad we made her stay even if it's partially causing her emotions and fears to spike. She's in throwing distance of many, many family members. Duke would've been so isolating and she can't handle that (it's worse!!)

So more updates tomorrow. We are expecting the surgery to be a long one

Also thank you for well wishes. I don't mean to ignore them. It's just Stress. So much stress. I'm doing pretendy fun times to be less stressed but also just like. Nearly forgot my notebook trying to go to class. Accidentally locked Brody out of the house while I was in class. My head space is whack

Brody was fine, btw. He just got stuck in the rain - HIS FAVORITE and now he's STINKY - HIS FAVORITE ugh

jeez, poor Katie, talk about being through the ringer

Yeah.. it's been rough. Hopefully this is the last needed surgery for a while and hopefully the wound stays closed this time

Hospital updated, she's out of surgery, the surgery went well

She has a bone infection, likely due to malnutrition. So that's..... a whole thing

The infection is along the bone (spine) exposed from the opened wound

So this is the tricky thing. My dad blames the hospital cause they couldn't feed her before the surgery but........ I ain't no doc but that's not how malnutrition works

She was already terrifyingly underweight (90lbs, before the initial surgery we convinced her to "bulk" up and she got up to 105lbs but then she refused to gain any more weight)

I am very scared of this bone infection stuff

I was going to go to the hospital with my dad this evening but ... after that update I can't do it

Not because it will be hard to see Katie. I WANT to see Katie

But I can't mentally handle my dad screaming at doctors

And he is already picking fights over little things around the house (I left a spoon in the sink, the gall!)

He's slamming doors too..... I'm so out. I can't

We are in hide and close the door mode

Out of sight out of mind

He just left for the hospital.

I need Alex here. Or anyone. Anyone besides just me. Anyone to stabilize him. He won't act out like this in front of other people

Alex should be here tomorrow afternoon/evening with Jenna. Jenna also managed to get some time off to come. So hopefully this will help my dad's behavior

It's been a while since updates so here are some updates!

Alex and Jenna spent the weekend here. Katie is doing well. The surgery to reclose the wound went well. The infection was mostly scraped away but she's on antibiotics for the foreseeable future until the infection is very gone and dealt with

They are looking to get a pick line set up for her so she is attached to just one line instead of....... 4 atm?

They want to discharge her but it's not an easy discharge, there is set up and prep that needs to go into it

Alex is still here, she goes home tomorrow morning but will likely be back again Saturday/Sunday to help with care (we are anticipating Katie to get discharged on Friday at the latest)

MEANWHILE. Jenna's mother broke her shoulder in a fall and needs surgery this week (so we might have Katie and Jenna's mom in the same hospital level LMAO)

And Munchkin's other half, Sophia, is getting surgery today up in Boston so

The whole family is falling apart in some way. What a time

But yes, Katie is doing much better. My dad is more calm now. We just have to get through this week and then Alex will probably be staying for a LONG time.

She took FMLA leave so she can stay as long as need be

I don't think she doubts the care we were able to give Katie but I think she also saw how overwhelmed my dad and I were, how ill-equipped we were and was like So I'm moving in, right

Anyway, a relief to have some good news. We are hoping it stays good news even after the discharge gets sorted