The First Big "Bump" in My Treatment

Oh jeez, I'm really behind.
Lots and lots of stuff has happened since the last time I wrote a real post. A lot of junk, but also some really good stuff.
One of my excuses for not writing is that my hands hadn't been fully free until a few hours ago, because of several things, and it was a real pain to type.

OK, so I had a pretty lousy day on Thursday. I spiked a fever Wednesday night, didn't sleep much at all, had burning stomach crampy things, felt nauseous, and at some points was shivering hugely and uncontrollably. Yeah.... overall, not too fun.
For part of Thursday I felt ok. Then in the afternoon I started to shiver again. My teeth were chattering CRAZY loud, and I was shaking more than I ever have before. My fever got to about 102.6 F.
Sylvia and Bronwyn were there to hold my hands and give support, which was wonderful. At one point I found it highly amusing to sing through my chattering teeth, getting these rhythmic long notes with fun textures. But for the most part it was just really frustrating, having my body doing those things without my permission. So that went on for a few hours. Finally a bunch of doctors came in, and "listened" with their stethoscopes (like they do all the time), and talked about stuff (can't remember what).
I got to use a bedpan, which was an experience in itself. Not really fun. Very weird. Definitely uncomfortable. Not easy to do.
They didn't want me to get out of bed. My blood pressure was really low, and my heart rate was really high, and I was still shaking. They told me they didn't want me to pass out.

After some more talking, and a couple of re-visits from the doctors, they decided to take me to the PICU (Pediatric Intensive Care Unit). They were pretty sure I had an infection, which is not a good thing at all.
They said I might not get this room back. So we actually had to pack everything up. Well, my family did, I wasn't allowed out of bed.
The walls appeared again, and the surfaces were cleared, and everything was put into "Personal Belonging" bags. Sad!
They wheeled me down a few hallways, through some sets of doors, and into this glossy, shiny set of halls. No more paintings of squirrels eating peoples' picnics here. Even the ceilings had dark glass and little light patterns. Very snazzy place. My new room was much bigger. It was cleverly shaped and crafted, with interesting paint designs. Even the TV screen was fancy.
The nurse/doctor ladies/dude (three main ones) were really really nice, and cool.

One of the first things they did was put one of those clear in-the-nostril oxygen tubes around my head. It made me feel sooo much like a patient (as if I didn't already). But the gentle air flow was nice (even though at that point I didn't really need it).

I had to have an arterial line put in, so they could constantly monitor my vitals. The idea freaked me out. They were going to stick an IV-like thing into the artery in my wrist?! Yeah, they were. Even one of the doctors said it would be awful. I thought she meant "awful" as in painful. I asked about it. Turned out she meant "awful" as in "really annoying". I relaxed a lot after that. "Annoying" hardly bothers me anymore.

So, the dude (really nice guy, fairly young, can't remember his name) got all his equipment ready, put a blanket under my arm to protect the sheets, and every nurse/doctor gloved up. He syringed (is it a word? It is now.) some numbing stuff into my wrist. He tried to put the line in twice on that wrist (my left one, so that I could keep my right hand free). The first time just didn't work. The second time he got the tube in, but when he tried to put the wire in something exciting happened.
>Warning< If you don't like to hear about blood stuff that is kind of gross, you might want to skip over the next few sentences.
I wasn't really watching, but I felt a small fountain of blood LAND back on my hand. It had actually SQUIRTED! And I have NO clue why this didn't bother me. Instead, I found it really fascinating. I knew arteries had lots of pressure, but I'd never seen it (or rather, felt it) in action.
Anyway, they gave up on that wrist. Moved everything over to my other side. Numbed my right wrist. Got the IA (I think that's what they're called) in, finally. Relief.

So here's a crazy thing. There was something about my veins stretching, shrinking, and doing some weird things, because of who-knows-what (ok, I just can't remember). So they speed-pumped roughly two and a half gallons of fluid into me. Gahhh, I felt sooo puffy, over-full, and weighed down. It was harder to breathe. My right lung (I'm pretty sure that's what it was) started hurting, and made it even more painful to breathe.
So yeah. I slept there that night, but not very well and not very much. The overnight ICU (really PICU, but they kept calling it the ICU) nurse (one of the ladies who was there when I got there) was really sweet, and super cool. Since it was the ICU, she only had one other patient (a baby who is apparently very cute), and she spent the night doing paperwork on the other side of the glass in my room. The doors of my room were glass (though there was a curtain for when I used the commode (another interesting new experience)).
I was really weak. It was hard to stand, because my legs felt achy and jelly-like. It would have been very hard to get across the room to the bathroom, even with help from a nurse. I hated feeling that helpless.

The next day (Friday) was long, but I started to feel better. I stayed in bed all day (of course).
People came to visit.
Claire, Sue, and Betty came in the morning. Claire played part of her senior flute recital (which had been the evening before) for me, which was really sweet and really awesome.
We hung out for a while. They (the moms, (mom, Sue, and Betty)) went for a walk. Eventually they had to go. We had some family time.
At one point, Dan (from the Rochester Contra dance) came and hung out for a while. It was nice having visitors while I was in the ICU.
Even some of the nurses from 41400 came and visited, which was really sweet.

That evening they pronounced me stable, and said I'd get to move back to 41400 that night.
My arterial line was going to come out. And for some reason I wasn't excited about it. Once it was in, I liked it better than the blood pressure cuff squeezing my arm. But out it came, and I couldn't even feel it when she slid it out. The nurse put pressure on my wrist for over five minutes, to make sure it stopped bleeding. It didn't really even bleed that much. Then I got a pressure bandage (just a stretchy piece of really sticky bandage, with gauze underneath).
We packed up our stuff again (much less this time, and they even gave us a cart), and they wheeled me out. It was nice to be going back to my unit (and it turned out I got my old room back!), but for some reason I wasn't super excited. I dunno why... I guess I kind of liked it in the ICU. But of course, I didn't need to be there, and other people did, and it would have been silly for me to stay there.
I did get a warm welcome when I got back. The nurses seemed really happy.
My room felt so small after the ICU! I even felt a little claustrophobic.
So I'm all moved back in now. And I AM happy to be back.

Yesterday (Saturday) was kind of a lie-low day. People visited. I can't even remember what I did all day. My lung started feeling better. I had some stomach crampies at some point, I think. I was able to stand up again, gradually getting stronger.

Oh! Yesterday, I was sitting on the loo, and I ran my hand through my hair, and.... more hair than usual came out! It was so exciting. I started pulling gently, and it just sort of slid out. I called out to whoever was in my room, and as soon as I was decent I had them come in and watch. I was overly excited. I know a lot of people would have been devastated. But I had been waiting for this.
I spent the next half hour sitting in my room with a bucket on my lap, sliding my hair out. It didn't really come out in patches, like they said it would. Instead, lots of strands would come out together. It didn't even really look like it was thinning, and I didn't get obvious bald spots.
Eventually I got tired of doing that. It didn't come out a lot on its own, so I didn't have to worry about making a huge mess all over the place. It did become a bit of a habit to run my hands through my hair and pull it out, though.

Today (Sunday) has been pretty good. I'm feeling a lot better. I got out of my room, walked around a bit, had visitors.

Very exciting event: I cut my hair, in preparation for shaving. It was sooooo much fun. I've been wanting to do it for a while, but never got up the nerves.
I got a pair of scissors and another bucket, and went at it. My dad held a mirror for me. My whole family, and Bronwyn, watched. I sat on my bed, and just took random chunks out. The scissors weren't great; they were just whatever the nurses had on hand. But they worked.
I gave myself funky layers, then merged it into a spiky pixy cut (my hair was especially good to spike, because I hadn't washed it for a while). We teased it into all sorts of strange shapes, and took lots of pictures, and had a blast. And the best thing is, I LOVED how it looked. I really wish I'd gone for it a long time ago.
Then my dad got out the buzzer, and started to give me a mohawk. But we didn't charge the shaver enough, so I have a sort of half-a-hawk now.

This other patient down the hall, a seventeen-year-old girl named Julia, has been wanting to know how I've been doing ever since she found out I was being taken to the ICU.
She's INCREDIBLY sweet. Her dad is too, and has become fast friends with my parents. They've been getting a lot of food brought to them too, more than they can eat, and he's been bringing it over for us. It's just been unbelievable how sweet and caring they've been.
Julia had a sort of tumor growing on her chest, and had to get some major surgery done a little bit ago. She seems to be recovering nicely. She's going home around Tuesday. She has come over for brief visits a few times, and today she gave me a beautiful painting of flowers that she painted for me while she was here. I'm going to make her a friendship bracelet.

I'm getting an ultra-sound (a kind of x-ray thingy that is interactive, or something like that) of my legs tonight, to check for blood clots. My feet are really puffy and funny looking. They think it's from all the fluids, but they're going to check anyway.

I sort of gave up on wearing real clothes (aka, my pajamas and a tank top), since the whole ICU episode. It's just so much easier to wear a gown.

I have a collection of disposable oxygen sensors stuck to my window like little electronic bug things. They go around one of my fingers, and plug into a little machine, measuring how much oxygen I have in my blood. When it gets too low, the machine beeps, and I have to take some deeper breaths to bring it back up to the mid-90s. I was using that during my whole time in the ICU, all of yesterday, and some of today. That was what was making it hard to type, even once the artery line was taken out. Finally got to take it off today.

My belief that all hospital food is bad (or at least semi-bad. I have had some good things here) has been washed down the drain ever since the default meal they brought me for dinner today (they bring food to everyone who doesn't order, and it's basically random).
It was stuffed pasta shells with amazing sauce and lots of goodies packed inside. And it was AMAZING. I wasn't even all that hungry, so I can't use that as an excuse. They still sent me super-soggy-green-bean-del

ight though, so don't worry, they haven't completely turned around.

I'm still not feeling great (I haven't felt great for a long time). My stomach is complaining, I have a bit of a headache, and I'm sleepy most of the time. But this sure beats Thursday.

I'm going to leave off for now.
Keep on being the amazing people that you are, know that you ARE amazing, and don't completely write off the idea of giving yourself a hair cut. It's so much fun, and you might like how it turns out!