4:34am April 16, 2013

And the other big event of the day.

Was the guy coming to deliver the oxygen stuff.

I had assumed, and the hospital led me to believe, that I would just get deliveries of a set amount of oxygen per week, like they’d deliver oxygen tanks and take back old ones, or something like that.

The reality is quite different and it was very overloading to have all this stuff happening at once. The oxygen guy came when I was trying to finish giving myself meds through the j tube and it was chaos.

He brought in this giant machine. I’d show you a picture but I’m too tired to get out of bed and take one.

The bottom part of the machine makes oxygen. Well it doesn’t make oxygen. It gets oxygen out of the air somehow. I don’t understand it. And there’s this super long tube that goes to my bed and connects to either my nasal cannula or my bipap machine and gives me however much oxygen I set it to give, and it’s pretty much that simple.

They’d tested me in the hospital and my oxygen had to be 88 or below off oxygen and improve with oxygen and it was so I passed or failed or whatever.

Anyway sorry this is all jumbled.

So then there’s a top part of the machine. And you can stick an oxygen canister on that and it will fill it up. They gave me two canisters.

And then they gave me one giant huge canister they stuck in the other room in case the electricity goes off. It has 48 hours worth of oxygen in it.

The fact that I flunked the oxygen test worries me a bit. It suggests that either I’m breathing more weakly than before, or my lungs have been damaged by all the infections, or both. I imagine its a little of both because when I measure my own oxygen it varies. Maybe according to amount of phlegm in the way from bronchiectasis (the kind of lung damage I have) too.

And he also gave me a bag to hang off my wheelchair so I don’t have to push the oxygen around in a cart. The canisters are smaller than the big one in the cart, and they work differently somehow. I haven’t used them yet so I don’t understand the difference but its something about delivering oxygen according to my breathing, rather than constantly. Which saves oxygen.

I’m actually fascinated by these new devices I’m getting, but the oxygen machine is big and it’s taking getting used to having a huge new object in my bedroom. Also I won’t be able to light candles anymlre. :-/

But I’m glad I got oxygen because it might make me able to cut down on using my bipap as a makeshift ventilator, which is good, because the bipap is part of why I aspirate, and even when I don’t, it puts air in my stomach.

Anyway thought I’d describe all this for my medical device geek friends (you know who you are). I’ve never really sought out information on stuff like this but I do find it interesting now that it’s sitting in my bedroom. Also slightly intimidating because huge, and new objects sometimes intimidate me. But also exciting because air is a really really good thing and I thought it was going to be harder to prove I needed it.

I seem to be becoming more of a cyborg every day. It’s a bit of an emotional roller coaster. Because on the one hand it’s wonderful to feel better. And on the other hand my body isn’t used to feeling like this at all. And on the other hand all the stuff they’re doing is interesting (I totally understand why my hospital roommate was fascinated with the procedure they did to basically caulk up her lungs during cancer surgery). And on the other hand it’s new and scary and hard to get used to. And on the other hand…. CYBORG. And on the other hand, reminds me of my own mortality. And etc. So it’s wonderful and terrible and everything in between.

Good grief why is Fey just staring and staring and staring at me?

Idk. Tired. And I think at some point the reality of everything I’ve just been through is going to hit me, really hard. But it hasn’t happened yet. It’ll happen when I’m least expecting it. I know this, and yet it will, anyway. Because knowing that doctors didn’t want me to have all this stuff that improves my life and allows for that life to continue at all, and knowing that some of them knew quite consciously that the alternative was death, and knowing they value my life so much less than I do. That will hit me. Eventually. Right now I’m still caught up in this whirlwind that today has been.

My friend predicted that I’d break down as soon as I saw Fey, but when I saw Fey I still had to keep functioning, and I still have to, through today and tomorrow (doctor appointment) and stuff, and that stuff always hits you the moment you’re safe and have downtime and don’t have to function.

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