I had to have my tube swapped out on the 31st, and I was petrified going in. I do not like getting tubes swapped out to begin with, it’s always terrible for me unless they do the anesthesia properly, and unless I have an anesthesiologist they almost never do the anesthesia properly. On top of that. You remember how I said I was having a complication under anesthesia so the local hospital said I had to go to the big hospital to get my surgeries from now on since they were better equipped for emergencies?
Yes. Well, it turns out it’s a completely preventable (but deadly) heart rhythm they were causing by giving me a medication after I told them repeatedly not to give it to me. (YAY!) So now I have a brand new and more terrifying fear every time I go in. Because no matter how much I advocate for myself, they’re cowboys over there in the surgical theatre and they do what they wanna do. “Well yer still alive, ain’t cha?”
Uh. Yeah. But I might not be for long if you keep acting like an asshole. >.> It only takes one annoying surgeon to decide they’re going to do the wrong thing one time because they’re sure it’ll be fine! And THEN I’m screwed. So. Huzzah new fear. >.<
Anyway. I haven’t mentioned it yet, but I have a new love, and I’m going to refer to him as Dragon when he comes up on my blog, if he comes up here on my blog. Dragon couldn’t be with me in person that day, (he’s long distance) but he was with me texting and sending me pictures and videos as much as he could be.
Master Pravus was with me, and they tried to tell us he wasn’t allowed into the hospital with me despite my physical disabilities. (I can’t lift my feeding tube backpack, and I need help getting my abdominal binder on and off. I don’t have the physical hand strength to get the bottom velcro off by myself.) I explained that to the woman who called from anesthesia and she said “Well, it’s out of my hands absolutely nobody is allowed in due to COVID.” And I tried SO HARD to advocate for myself. I said “Well, whose job is it then, who can I talk to if I have a physical disability, and I need an accomodation?” And she tried to tell me “A nurse will help you.” And I said “That’s a nice thought, but I’ve been alone on the surgery floor before, and the nurses won’t help with getting undressed, and it’s so awkward because they always go “Good luck you can do this yourself and then I have to BEG them and they still don’t want to help.” “Well, it’s still out of my hands, see you tomorrow.” And she hung up on me. And I sat there so upset. I mean. What are you supposed to do?! I can’t physically do it myself and the nurses do NOT help with dressing/undressing and I do need help with my abdominal binder.
So, Master Pravus looked it up on the website and it turned out they have an accessibility advocate at the hospital that’s required to be on grounds 24 hours a day because they got in huge trouble for not accommodating people with disabilities. Master Pravus called the number immediately and OH MY GAWD it went to the same exact woman I had been talking to in the anesthesia department who was determined to tell me it was “above her” and “out of her hands” and “nothing she could control.” Blah blah blah. She immediately told him that he was allowed to come back to help me change but then he had to leave. And that he would be allowed back upstairs after my surgery, but only to help me get dressed again. Just to be on the safe side, Master Pravus also emailed the accessibility advocate because we wanted to make certain there was no confusion over where he was allowed to be on the day of.
Every time something like this happens, I get so upset. There are too many things, too many barriers, too many roadblocks in the way. Why is everything so difficult? When we arrived an accessibility advocate was there to greet us and make sure Master Pravus was allowed to stay with us and let me get undressed. Then Master Pravus had to leave.
I would’ve probably been okay if the thing ran on time. But I wasn’t okay. Not at all. The first nurse I had told me that they were running “a little behind,” and I immediately panicked. I mean. How behind? She told me “One person ahead of you, so maybe another twenty minutes or so.” And I tried to relax, but I do have an intense fear of hospitals.
It took them over four hours and that entire time I was climbing the walls. I just. Have such a hard time being alone in the hospital. When they used to allow Master Pravus into the hospital waiting area with me, I used to be okay. I could close my eyes and feel the warmth of his hand and I just felt OK. My heart rate would slow down and I felt alright. It wasn’t so bad. I didn’t have to listen to everyone poking in and out of my room, I didn’t have to think about people hurting me or randomly putting things I can’t have into my line, I didn’t have to think about anything. Just focus on his hand until it was my turn.
But not only am I alone now, despite not being able to navigate well in a large building (I’m supposed to be able to have an escort because I have trouble ambulating in a big area, have a feeding tube etc, but discrimination yay) but it took a ridiculous amount of time to get an anesthesia team up to me. Usually they have an anesthesia team booked for my appointment time. On this day, it honestly felt like they booked me as an add-on or something. I mean, I literally just can’t imagine how else things got that mishandled. It was so bad.
And while I waited, all I could do was text. Alone. I kept thinking “They’re going to take me soon. I’m sure they’re going to fix this soon. My appointment was an hour ago. Two hours ago. Three…”
I would sent a text to Master Pravus or Dragon, and either one of them kept my hands busy and my heart as full or relaxed as they could. Master Pravus kept telling me that I was waiting for anesthesia so that I would be safe. That they would keep me safe, and I would be OK. Dragon kept holding my hand and soothing me too via his messages. Both of them were passing the other messages depending on who I was texting at the time when I was given an update. This was literally the sloppiest surgery I’ve ever had. And it was absolutely made worse by not being allowed to have family in the room with me.
But something very interesting happened while I was up there and my two boi(y)s were trying their best to soothe me. (A largely hopeless task, but they did collectively bring my anxiety down from 90% to about 40% over the course of the day, which, is damn good considering they weren’t allowed in with me.) While I was in the bed receiving pictures and texts and videos from my boi(y)s, I realized- even though Dragon is long distance- everyone was the exact same distance today, because the hospital wouldn’t allow anybody in! So even if he had been local, texting (like Master Pravus was doing) was all he would have been able to do anyway. And I was struck with how profoundly tragic and sentimental that felt.
And the even sadder thing about it being that Master Pravus is fully vaccinated and not only does he wear a facial mask properly- (over his mouth and nose at all times unlike nearly every medical professional in the hospital we were at) but he usually puts a second, cotton mask on top for better protection. He’s serious about his COVID prevention. >.>
Eventually, around four and a half hours after I got to the hospital they did take me back to do the surgery (OH MY GAWSH!). And thankfully the anesthesiologist was super nice (THEY AREN’T ALWAYS) and we seemed to be on the same page about not giving me the no-no drug. And after they strapped me to the table, I don’t remember anything. Usually they warn you you’re going to sleep but I don’t remember him warning me I was going to go to sleep. I just woke up and told them I wanted to see Master Pravus and as usual they said “No.” So I said “Then can I have my phone please?” And they said “Not until you’re more awake.” And it’s really hard to sedate me to begin with so I knew I wasn’t going back to sleep and I decided to just make steady, uncomfortable eye contact with her until she went to get Master Pravus and then my phone. *Impish Grin* She went back pretty quick after that and I texted Master Pravus so he could call upstairs and ask if I was awake (hehehehe). Then I texted my Dragon (I was sure he’d be asleep but he’d see it later) so he’d know I survived. *Arm pump*
So I have this new tube now, and it looks completely different than the old tube, and the G and J ports are on the wrong sides. Well, there’s nothing wrong with the sides they’re on, I guess. But I’m used to them being on opposite sides. And also- all of the syringes we have used for the last five years do not work with my current feeding tube. So we have to wait for a new shipment and the hospital sent me home with one syringe. Heh. Nice. Let’s hope it lasts until the shipment shows up because they don’t just sell them wtf? Everything like, screws into this new feeding tube, whereas before it was like a little plug that you kinda just pushed things into? Odd. I wonder if the screw is more secure? Time will tell. But we both HATE the new screw-on syringe. What a pain in the ass. It’s so hard not to spill meds everywhere. >.> Bleh. Practice needed, I guess.
Anyway, at this point this is what.. My fifth? Sixth different tube style? We’ll see how it goes. For now I’m just relieved I got out of the hospital alive with no one setting off that heart arrhythmia (thank you Flying Spaghetti Monster), and I’m grateful as fuck for Master Pravus refusing to leave me alone and constantly reminding me “I’m one floor down and I won’t leave you.” And my Dragon never wavering and being with me the entire way down and through every minute I waited. Constantly holding my hand and sending me videos and being there for me too.
My heart is full of so much love and I am a very lucky kitty indeed to have so much of it.
A few nights ago I said something to Master Pravus, and I don’t remember exactly what I said, but I told him I didn’t feel worthy of love because I always have to go to the hospital and I’m terrible about it because I’ve been through too much there. I get so scared. And he said “Kitty, you’re incredibly lovable. You’re so lovable. You’re lovable even when you’re scared, and being scared isn’t your fault. And having to go to the hospital isn’t your fault, and those things don’t make you less lovable.” And I felt so stressed because I had to go to the hospital the next day (my biggest fear) and I said:
“How do you know?”
“Because I love you.”
And I just cried. Of course. You dummy. He loves me, and he didn’t stop because I am scared of something I can’t avoid. And if anyone else out there is reading this and gets really scared about something, you’re still lovable too. I’m sure of it. I just wish I realized it sooner.