Wednesday, November 26, 2008

Was it Worth it?

If you're reading this blog, its with a high chance that you are either going through recovery from a similar surgery or considering putting yourself under the knife. I'm sure this is not the first blog you've read - if you're anything like me, that is, and need to have enough information as possible before you make any decisions. So I'm sure you've stumbled across the declaration "It was worth it!" many a time.

I'm going to jump on the bandwagon with this one: It *was* worth it.

Has it been easy? Hell, no! Has it SUCKED BALLS more than once? Hell yes! Were there times when I *did* regret doing it? Definitely. Was I/am I still kind of angry with fate that I had to go through it? You betcha. Is it lots of fun having your appearance change? No, I can't really say it is.


I know I still have much more healing to go through, as well as more frustrations, and probably a few more crying jags to boot. But after only a month, I can sleep fully reclined in a bed. I can sleep without having to be propped up on pillows (which I was doing even before the surgery.) I do still wake up tired, but nothing like I used to. I dont have to go to sleep at 9pm anymore because I just can't stay awake. I don't have to take a 3 hour nap at 2 in the afternoon because otherwise I will be useless all day. I don't wake up with the CPAP hose wrapped around my neck anymore. I don't have to go through the ritual of medications and setting up the machine, and taping my mouth shut, and being woken up in the middle of the night by leaky masks. I may not be 100% fixed, but there's a freedom there that I didn't have before. At the very least, I feel less broken than everyone else just having to use that damned machine.

Husband came up to me the other morning. "I couldn't hear you breathing," he said. "I sat up in bed and actually leaned over because even before the CPAP, your breath always struggled. Now I could barely hear it!"

Was it worth it? A thousand times yes -- with the small exceptions where I am PMSing, of course.

4.5 Weeks

Wasn't that a famous movie? Except with the number 9? Rest assured I won't go into any torrid detail here, and Mickey Rourke will not be making a guest appearance in this entry (dammit.)

So here we are! Just a hint more than a month since I had my surgery! Things are continuing to go really well. I've graduated up to (mostly) soft foods with the occasional use of the baggies (some things are just better eaten through the straw,) which helps my mental state IMMEASUREABLY. I weathered that cold my daughter gave me, and seem to be none the worse for it, although it did knock some more blood out of my sinuses for a brief while. Had a few really impressive and colorful blows in there. Speaking of nose-blowing, I do still pop my ears almost every time I blow my nose; with the sinuses being somewhat traumitized during surgery, I've got the long-running symptoms of a head cold, which doc says is very normal. Ditto for the very occasional ear-infection-like stabbing pains below my ears. All normal, normal, normal.

My energy is slowly coming back, although I am still a bit draggy because I am still undershooting a bit on the liquids/caloric intake (have lost 20 lbs in 4 weeks.) Adding to the problem is that I am also tapering off of some steroid medication I was on pre-surgery (have been on it for more than a year due to previous brain tumor surgery,) which makes me feel kinda crappy. Obviously is a very speciallized issue for just me; anyone reading this for reference should not have that problem tapering off of any steroids you may have received in the hospital.

Numbness: Can't lie, butI'm not at all surprised to find out I still have plenty of numbness. But, there has been a tiny but noticeable change in the amount. My tongue still has just the slightest bit along the front edge, but is otherwise fine. On my chin, it feels like the boundary between totally normal and "Hey, who took my chin?" has shrunk by a few millimeters, with a small chance that I'm just projecting some wishfull thinking, but I don't think so. Because while I wouldn't say that I have feeling back, I'm definitely getting some sensations back. And let me just say that I'm realizing how lucky I was that I haven't been able to feel much of anything for a month. Whew! I'm definitely getting teh aches in my chin, be it from talking too much, or eating with a baby spork or what. Have even had to take ibuprofen a few times just to knock it back a bit. And when I apply any pressure to my jaw - say when I am applying new wax to the braces - it causes pain now. Not oh-god-kill-me! pain, but yes-something-is-definitely-going-through-a-healing-process sensation. My upper palette is still pretty numb, as I've discovered when brushing my teeth: I can't tell that I am. But I have faith that'll come back. Oh, and that small strip of kinda-numb that went up to my right eye has backed of noticeably as well. Again, still a hint of not-quite right, but improving.

Range of motion: getting pretty good with this one. I think between a lot of the incisions healing, some of the numbness going away, and just losing my fear over having my face split in two if I used it too much, my mouth is much more flexible. I've got much more movement pursing my lips that doing anything that requires stretching (ie: smiling) but its coming along. The left side is stronger that the right so far so I always look a bit lopsided, but at least I get to kiss my kid again. The tongue is doing great. I'd had a lot of fear about this one as I was going to have GA on top of just the jaw surgery, and so far, its been a non issue. I do occasionally get a twinge of pain at the base, but that's about it (ok, well, I get a lot more than a twinge of pain when I chomp down on my tongue with all those teeth I can't feel, but that's a different story.) I can wag my tongue from side to side around in my mouth and can actually stick it part of the way out of my mouth! (Both of those are a bit hindered by the bands I am still wearing.) Only time will tell, but I think I dodged some bullets there.

Braces: Ahh, braces, how I am tired of thee! Really, they're currently the worst part about the experience. My teeth ache all the time from them. Again, not pain enough to drive me off a cliff, but discomfort enough to really really REALLY want them out of my mouth. Making things even more intersting is the rubber band at the front of my mouth. I've got one that goes from the center of my lower jaw to the outside edge of my right front tooth. Well, there's a bit of a space between my front tooth and the #2 tooth, so that rubber band constantly slides in between, and actually sits BEHIND my front tooth. The docs are fine with it in that it ios still holding my jaw in alignment, but its presses into my gums something fierce! Sore all the time. All flossing, all the time, you might say. I'm quite over it.

But that's ok, because when I went in for my check up today, doc says I am getting my braces off next Tuesday (Dec 2nd) -- failing any catastrophic failure**, of course. So! Happy! I! Could! Cry! Must rememebr to take a few more pictures before they are Gone! For GOOD! :D :D :D

**Doc is still a bit concerned that my jaw still pops out of alignment when I sleep, and that in the mornings I have to sort of manually line everything back up. But he's pleased with progress to date and is buoyed by the fact that I *can* move my lower jaw from side to side just using my muscles already (apparently that's pretty uncommon at 4 weeks,) and said he thinks worst case I may have to go do a little PT until its no longer an issue. I think I can deal with that.

So, really, its all going well! Fingers crossed/knock on wood/burning a goat in sacrifice, it will continue to do so and soon this will all be no more than a collection of blog entries! (And by soon, I mean over the next year, probably.)

Sunday, November 16, 2008

Not All Rainbows and Flowers

The Monday following my surgery, I went to the doctor's office for a follow up and x-rays, and nearly passed out. I kind of crumpled to a chair in the waiting room and had to be escorted back into the office where nurses and doctors fluttered nearby and took my blood pressure. Fairly low. Apparently I'd gotten pretty dehydrated. 20 minutes in the reclining chair and two bottles of water later I was feeling better, if not slightly weak. Have been truing to stay on top of it since then.

Today I felt unsteady bending over to look at a plant in the garden, and then I got light-headed from blowing my nose. Not good. Pretty certain that means I'm good and dehydrated again. Might not be getting enough calories either. Goddamn it.

This whole surgery has been a real eye-opener into taking things for granted. Like eating and drinking. It really is a fair amount of work to stay on top of your dietary intake needs with your mouth banded shut/broken/whatever you want to call it. No really -- its work. What do we have to eat that I can actually consume? Is it liquid-y enough to go through a straw? Too hot? Too cold? Have you added the fiber? How about the protein powder? Liquid vitamins? Where are the special bags? Are all the baby spoons in the dishwasher? Crap, I'm spilling all over myself! Boy, am I tired of eating this! My jaw is aching from trying to work with the spoon. What do you mean, I'm still wearing breakfast on my face? Man, my stomach has totally shrunk; I get full so quickly.

I started this whole procedure carrying extra weight. So admittedly, losing a few pounds on the restrictive diet was not a bad thing for me. Plus, I am aware of how important nutrition is, especially when recovering from a major medical procedure, as well as the dangers of crash dieting in general. Believe me when I say I am honestly trying to do right by my body here. But I have spent the last several years battling the bulge and trying to change my eating habits, so this constant grazing for calories and 'add butter or oil for calories!' advice really goes against everything I've been trying to rewire. The nonstop eating makes me feel kind of, well...guilty!


Having kind of a crappy day, as you can tell. Tired. Sick. Worn down. Frustrated. Meh.

Saturday, November 15, 2008


That's what was spelled out on my chin and shirt by the time I finished eating my can of alphabet Spaghettios today for lunch. But boy, were they tasty -- and not soup!

Ice Packs and Your Face

I'm sure you've already seen the photographs somewhere: someone laying in bed post-sugery, their head wrapped in ace bandages and ice packs, looking not unlike a 19th century illustration for a child with the mumps, knot on the top of the head and everything. And let me be the first to reassure you that the ice actually does help. It knocks down the swelling, and definitely provides some tactile soothing to your mightily abused jaw line.

But the whole sock-full-of-crushed-ice is not without its issues. For starters, its heavy. You are probably gonna be tired, and having this awkward weight balanced off of the top of your head can be uncomfortable, not to mention might make watching crappy tv in the hospital a bit of a challenge. And hopefully you'll have a thoughtful and attentive nurse who will try to make the ice pieces as small as possible in the hospital, but the truth is you're still going to have chunks poking you on your tender face, no matter how careful you are.

Stick with the ice! You'll be glad you did! And when they send you home with that sock to fill with ice packs, take it! But do a little legwork beforehand and invest in some of those refreezeable blue gel packs. You'll be happy you did. 1) You won't wake up one morning with the front of your Bugs Bunny pajamas soaked from the slow leak of the ice bags, 2) they're flexible and will conform to your face nicely, and more importantly, 3) there's no ice cubes to jab you while you are trying to sleep/heal. Also, there are some brands out there that come with there own ace-bandage-with-a-pocket-for-the-pack-and-velcro-too; I put two of these together to get a pack for each side of my face and was able to velcro them nice and snug in place, as opposed to the knot from the sock.

You may drop about $20 on ice packs, but it'll make you more likely to use them, and really, who doesn't occasionally need an ice pack now and then? Do it. You know you want to.

A Public Service Announcement

With all of my sitting around and recouperating time, I think I'm going to design a masscot and everything. "Only you can prevent constipation."


Knock, knock, knock.

Now who could that be?

Knock, knock, knock.

Wait, are you kidding?

Knock, knock, knock.

Its finally here! I wasn't sure this day would ever come!

Knock, knock, knock.

Hang on, hang on, I'm running upstairs!

Knock, knock, knock.

Sitting! Here I go; I'm sitting!

Knock, knock, knock.

Ahhh! Finally! This is gonna make me feel so much better!

Knock, knock.

Ok, a little slow, maybe...


Its cool, I'm patient...






Husband, can you bring me some magazines?


And a glass of water?


And some stool softners?


(30 minutes later) Ok, I'm losing feeling in my leg....


Ooh! Ok, here we go!


Nope, false alarm. dammit.


(20 minutes later) There goes the other leg....






(90 minutes later) Well, ok. maybe now's not the time. Let's see if we can get a little movement the other way...


Are you kidding me?!? You're just gonna sit there? I'm commited now? I can't even back out if I want to?!? Goddammit, I want to stand up! I'm getting gangrene in my feet from lack of blood flow!


Gonna be that way about it, huh? Ok, I didn't want to have to do this...


My god, I didn't even know you could *get* sideways in there! Did they slip me concrete mix at the hospital?


Great, now I've given myself a bloody nose. If I blow out stitches in my face because of this, I'm going to be really irritated!


So you think maybe we can talk about this?


....put my wallet under my tongue....

knock, knock

...flashing back to the birthing table....

knock, knock, knock

...I'm cukoo for Cocoa Puffs....


(pant, pant) The ceiling...why am I looking at the ceiling...what day is it? (Stands up. Crumples.) Medic! I need a medic!

Off the Hard Stuff

Which reminds me:

I've been off the pain meds (OxyContin) for almost 5 whole days now (just shy of the three week post surgery mark for reference,) and I'm fine. Stopped taking it because I really could not stay awake, but also because I was having terrible, wake-up-screaming kind of nightmares, which is a Bad Thing on several different levels. (Not sure they were even from the meds, but wanted to try. YMMV.)

Its actually gone really well, and I've found I really didn't need it anymore. True, there is still that odd achiness from the braces, but while that is a strong sensation and definitely grabs your attention, it doesn't actually hurt, per se. Plus, I found that the OxyMumble didn't really address that sensation so much to begin with.

Now that I'm off the meds, I am awake almost all day (still sleepy bits, but I no longer have narcolepsy,) I sleep better at night, my brain feels 100% clearer, and I can take a s*** without having to have an epidural first. (Drink lots of fluids, get fiber supplements, bathe in prune juice -- it takes extra extra work to keep yourself regular while ingesting a narcotic.)

Immediately post-surgery, this stuff was great and did the trick. Initially recovering back at home this stuff was a godsend. But it does become unnecessary, and possibly even sooner than you might imagine. Looking back I almost wish I'd started cutting back a day or two sooner. I didn't realize how vaguely...unpleasant the meds made me feel when I didn't need them. Dunno how Rush Limbaugh did it.

Oh, I do occasionally take a bit of children's liquid ibuprofen these days if I'm feeling pained. Mostly its to kind of knock back the cold a bit, but it does help somewhat with the swelling and slight discomfort I still get in my face sometimes.

Zip n Squeeze

Which reminds me:

If you are going to have this (or a similar surgery) done, I do suggest picking up some Zip n Squeeze bags for the purpose of eating/drinking once you get home. I personally did not think they were the be-all-end-all** of post-surgery feeding technology, but they will definitely get the job done. A few pointers when using them, though.

1) Don't microwave them. Possibly an obvious thing to say, but Husband did do this a few times, and even with short times, it will slowly start to melt some of the seams. Be warned.

2) Make sure your food is thin enough. The more liquid-y, the better.

3) ALWAYS use the extra safety clip across the top. It is suggested you use this only when putting greasy foods in the bag, but I had more than one experience of ending up wearing whatever was in the bag because the zip seal failed. Bit of insult to injury, if you know what I mean.

Personally I was really happy with the feeding syringe they sent me home with from the hospital. I didn't think it required any extra dexterity. Actually I thought it was much more efficient in its food delivery method than the bags, which I felt you had to kind of chase the food/liquids around in, or start rolling the bags up like toothpaste tubes or the like to get everything out. The only real reason I switched over was because the seal started to break down on the syringe, and suddenly the friction was too great to draw in/squeeze out whatever was in there. Meh. At the very least I'd still suggest bringing one or two home from the hospital for taking pain meds, though.


Since the surgery, I've been in the doc's office about 2-3x week, just to make sure I'm doing ok and that there are no issues with healing. My jaw started to drift last week and my bite was no longer lining up, so that's why they had to put the bands back in. I was a bit disheartened by this,less because of the floating jaw (the docs seemed very confident that they could fix that) but because I'd enjoyed being able to kind of open my mouth. The bands made me kind of nervous, so even though they weren't the stiffest ones the docs could have used, I sxtill lost a bit of mobility up there. Not to mention it made brushing my teeth in any fashio a bit more of a pisser as well.

However, I've definitely adjusted to having them in there and am waaay less afraid that I'll accidentally open my mouth too wide and snap all of them simultaneously and send myself into spasms of pain (I did have one snap on me, but other than a very minor sting and a surprised look, it was kind of a non-issue.

Doc has been assuring me for a while that I can eat soft foods whenever I feel up to it - mashed pootatoes, scrambled eggs, that sort of thing. Even on a good day it didn't feel like I could open my mouth terribly far, much less jam a loaded spoon in there. But yesterday I sort of hit my limit and needed to eat Real Food (tm). My caloric intake had really been dropping off as I was really having trouble consuming any more soup or other pureed food item.** Just couldn't make myself do it. Plus yesterday i just needed a strong flavor. Went to the grocery store.

Last night I had a bit of a feast. I blenderized me up some bbq chicken (delish!), got a vat of potato salad, and some chocolate pudding. Know what else I got? A baby spooon. Oh yeah, moving up in the world -- I ate with a spoon last night. Sure, I ended up wearing a bunch of my dinner, and it took me about an hour to eat, and another hour to pick a bunch of the chicken out of my bands (I chopped it instead of liquifying it,) but I did it. Oh god, that was good! Picked up a can of Pringles as well. Broke those suckers into small pieces and just kind of let them dissolve on my tongue. Mmmm, salty, slightly soggy/crunchy goodness (I daresay I mightve had some involuntary up and down jaw motion with some of those damp chips.) And to top the whole baccnalia off, I drank my water out of a glass. Get out of town, you say, and I say, no! I drank two whole glasses of water without dousing myself or shorting out my loaner laptop! Hallelujia! She has been saved! Now keep in mind that I still can't feel anything on my lower lip or chin, so I have to sort of reach up and check with my hand to make sure I'm actaully making contact, and I'm sure that wackiness will ensue at some point in the future, but still -- progress!

Its times like these that I have a LOT of gratitude that my mouth isn't completely banded shut like I expected it to be. I think I would've gone nuts and tried to stab myself to death with the Zip n Squeeze straw by now.

** For some reason, I have never taken to smoothies on this dietary adventure. I had been cutting back on dairy prior to the surgery to help keep the mucous down, and seem to never have gotten fully back on the wagon. Also, I have craved warm food about 10x more than room temperature or cold food since the surgery.

Friday, November 14, 2008


Yes, I have been taking photos, but as most of my computer time ison a loaner laptop that I'm not too familiar with, I've (obviously) not been posting pix here on my blog. However, I have been compiling them in a set on my Flickr account. I'll just keep adding to them as I get more, so feel free to check back in. And maybe someday I'll actually get some pictures loaded directly onto my blog. Gasp!

Kill Me Now

Ok, I wasn't lying about having clear nasal passages, but I sure as hell did jinx myself. I seem to have caught a rockin' cold from my four year old, and I am miserable. I had a sneeze or two earlier this week - no big deal once you figure out the science of not moving your lips and jaws while you do it - but it wasn't until yesterday that the rest of it kicked in. Sore throat, complete congestion, dry lips, and swollen tonsils. Plus I feel achey all over, and kind of headachey too. Meh! Just as I was composing another entry about how surprisingly good I feel for a mere 2.5 weeks post surgery!

If this is going to run its course anything like what my daughter had, I'll probably be pretty unhappy for about 3-4 days, and then will perk up with just residual coughing and congestion. I guess it could be worse; historically, the tonsils swelling up was almost guaranteed trouble breathing as my throat was so narrow. Not anymore! Yay surgery!! :D Nor did I catch the barfing flu, so I've got that going for me.

I do do much better when I am injured vs. sick though. When I am sick, I shut down. When I am injured, I just get impatient. Looks like I'm back to really sitting on my ass for a fedw days.

Thursday, November 13, 2008

These Pipes are Clean!

I can't believe how open my sinuses and the like are post surgery (2.5 weeeks.) Immediately after the surgery I was very open, but by the second night the expected congesion/bloody grossness kicked in (they do cut into your sinuses, after all.) At the hospital I was given saline spray and a spray nasal decongestant -- hell, I even used a nasal steroid that I'd been prescribed pre-surgery (after asking my doctor first) to help open everything up. There was some limited sucess, but mostly I did a lot of snorking and light coughing and spitting up of bloody mucus that was being slurped around.

When I got home from the hospital I tried to keep up with the regimen - when I was awake, that is - to try and clear all that stuff out. I found myself breathing a lot throug hmy mouth, which was just drying all of that out. Besides, I felt even less attractive *having* to walk around with my mouth hanging open on top of all the regular swelling and whatnot. Tried a netti pot during a few showers; that was probably the most helpful thing I did that whole time. Not surprisingly the surgery changed the shape of the inside of my nose a well just by proximity to all the real action, and I found that the saline/netti pot/whathaveyou shot around much easier. Sligtly unnerving the first few times, to tell you the truth. But effective. To a point.

Well, I made it all the was to that first Sunday night before I had my first real, full-blown breakdown about the surgery. For an hour I sobbed all over Husband, oh-poor-me and it-isn't-fair, blah, blah, blah. Must've gone through about half a box of kleenex, what with all the snot dripping onto my sensationless chin. Very colorful stuff, too. But you know what? It totally did the trick. Since then, for the last week and a half, I've had almost no nose congestion. Having that insane bawling session really emptied my sinuses. No more random minor bloody noses, either. I've almost entirely stopped using saline spray or decongestant, and haven't had to go anywhere near the steroids. Its been pretty cool!

I know that my turbinades (sp?) are still reallyhuge, and I may need surgery of some sort to reduce their size at some point in the future. But for right now, I'm really enjoying just being able to breathe.

Tuesday, November 11, 2008

24 Hours

Without pain meds. Not sure if I'm being smart or not. Still have the jaw throbbies really bad, but its not really pain. Slept pretty good last night -- no freaky nightmares making me wake up in the middle of the night yelling. Also woke up bright and early at 830 this morning, without having to swim through groggy fog, only to pass back out again. Some sort of connection? Will have to wait and see.

Did sneeze this morning. Pardon me for one moment....


Will not be giving up my bottle of OxyMoron any time soon.

Monday, November 10, 2008

Oh and....

I think the first time I floss my teeth post hardware, I will have an orgasm. Note to self: do not floss at doctor's office.


Ok, I'm officially tired of soup and smoothies. Mark your calendars. It will be a new national holiday.

The first week or so weren't too bad: mostly my mouth hurt so bad that the idea of putting anything in there other than the smooth, creamy texture of either warm soup or a cool smoothie was wildly unappetizing and unpleasant. Besides, I like veggies and soups and hey I'm eating healthy foods. This doesn't seem so bad at all.


I think I'll be starting a new thread of blog entries here. They will be called "What I Wanted; What I Got". Maybe you can see where this is going. Let me give you an example.

What I Wanted: a foccacia sandwich with fresh mozarella, basil and tomatoes, with artichoke hearts and basalmic vinegar.
What I Got: soup.

Seriously, I am going to try and lose as much weight as I can while recovering, so that I can eat myself into a stupor when this is all done, and still retain my girlish figure (coquettish giggle.) The creativity has started. I've already mentioned the pizza and cookie experiments. When my bands were off I'd break off small bits of tasty food - smoked salmon! bacon! - and work them past my teeth. Then all I had to do was swallow them whole. This was often accompanied by shaking my head around and trying to knock the food into place from the outside. Two words: choking hazard. Two more words: looks ridiculous. The M&Ms worked quite well, however, as did the raspberry sorbet cut with a little bit of red wine to make it less thick for the straw. Bliss!

Yesterday in desperation I jammed some cornbread into my now-banded mouth just to have texture. (Had there been spackled plaster lying about I might've given that a whirl too.) Cornbread is a Bad Choice in that it breaks apart like a multiple warhead missle once in your mouth, and then you have to spend the rest of the meal trying to flush it out with your bag o' water, which is even less sexy that having to eat out of a bag while everyone else uses, say, a plate and a... fork and...oh heavens! Their teeth.

I have decreed though, that while I appreciate folks bringing over food, they are no longer allowed to bring soup. Soup? We got soup. Bought some stock in Campbell's too right away. (Oooh, no pun intended!) What I realized was that I needed to see other kinds of foods besides soup, so that I could hold onto the dream that someday I'd be eating something besides soup. That I hadn't enteretd some alternate soup universe where nothing but soup existed. Yes, I will mumble out cracks about how you are being mean by eating Real Food (tm) in front of me, but do not bring me soup! Seriously!

Wow, I suddenly have the most overwhelming urge to claw all that hardware right out of my mouth right now. So...hungry....

Good Source for Soup Recipes

Try, and enter 'soup blender' in the search engine. Tonight we had the apple/parsnip/chicken stew' recipe (with a little extra blending) and it was quite good. Y'know, still soup, but tasty.

A Good Idea Pays Off

I had a thousand and one things to do before the surgery. So of course what I spent my time on was stuff like making sure I'd dropped off my film, and cleaning the carpets and surfing the web. But there was one thng I'm glad I spent the time on. I grabbed a stack of Mags' books and spent a few hours one day reading them all into Husband's digital voice recorder (geek.) That way after teh surgery I could still sit Mags on my lap, we could listen to the recordings together, and we could still effectively have book time every night, just like normal.

I got about 20 books done - not quite as many as I'd hoped - and never did get them uploaded to the computer to be burned to disks. I never did get the stickers on the book spines so Mags would know which books I had recorded. The loaner boom box I got must've been circe 1990; it was nearly the size of a child's riding toy. The new recliner was a bit of a squeeze for anything more than me and my pillow. And sometime between me going to the hospital and returning, the voice recorder got lost.

But the other day, after nearly two weeks, the recorder turned up. My kid and I figured out which books were recorded, even without the stickers. The recliner ended up being big enough for the both of us. Mags held the recorder as I held her and together we listened to a handful of her favorite stories.

(happy sigh)

Yawns - Both Technicolor and Not

Story #1: Not

So I'm still sleepy a lot blah blah sleep all the time blah blah never awake blah blah. I'm starting to think the OxyMoron they've got me taking is doing more harm than good in the sleep department. Been having crazy dreams, and nightmares too. Plus this chair is not exactly designed for sleeping in -- at least not for a week and a half straight. Anyhow, I've found myself yawning a lot these past few days. And subsequently, in a lot of pain from yawning. No way is my jaw going to open into a full blown yawn, nor are my lips ready to be stretched over said jaws.

So for the forseable future, I will be continuing to perfect my patented "Stifle Yawn". when you feel a yawn coming on, fight it. I know the urge to let your mouth go as far as you can is very tempting and would feel oh-so-satisfying (really, they've taken away all food with texture, leave me something!) but trust me when I tell you to fight it. Your jaw will tremble, but if you really open it, you'll be met with some really incredible pain and your yawn wiull be cut short anyhow, so don;t even bother. Next, direct all of that air out of your nostrils. True, they're not really made to accomidate that volume of air that quickly, but it ain't gonna come out your mouth. Flare those nostrils! Flare! Flare, I say!


Story #2: Technicolor

"So that was Husband on the phone."
"He says Mags just threw up at their play date and he's going to bring her home."
"Unless you think he should take her over to Joj's house; he doesn't want you to catch this."

What to do? Four days out of the hospital. True, no bands right now, but I sure as shit don't want to be throwing up with an effectively broken jaw. But Joj can't really afford to catch it either, and well, I don't want to have to shun my little girl after having been gone nearly a week and when she's feeling poorly. I grabbed the whiteboard. Tell him to bring her home.

I hope I'm not going to regret letting Mags share my straw yesterday.....

There's a noise. I look around the black living room, but it doesn't seem to be coming from nearby. There it is again. From upstairs. Retching. I feel my way down the familiar dark hallway and up the stairs to the bathroom. Must get to daughter. Except its not.

"Oh, I'm sorry I woke you." Its my mother in law, losing what sounds like her whole weeks worth of meals into the toilet.
"Mmpff mmpff?" Can I get you anything?
"No, I'll be fine. Just need to get it out of my system is all..."

Poor Husband. He went from having to help with one mostly sleeping patient to three females all laid up. Oh, and his computer totally dying in the night. And a double fender bender while driving me to the doctor's the following morning. Poor Husband.

Now where's my soup?

Sunday, November 9, 2008

Oh Hell, Who am I Kidding?

Really, I'm not going to be able to adequately to re-live every minute from the surgery onward. I truly didn't think I'd sleep as much as I have, plus I thought I'd have a laptop much sooner than I did. Sadly, that translates into some details being lost. But I don't want to totally give up, so here's what I'm gonna do: yesterday I sent out an update to some friends and family, and I'm gonna paste that in here for now. Then, I'll try and and actually make real time posts from here on out, and all will not be lost. Ta daa! I'm smart....sometimes.


Thanks to everyone who has checked in with me recently to see how I am faring. Maybe I shouldn't be surprised by how much I have been sleeping post surgery, and I'm not complaining, but I just can't seem to stay awake for any length of time, and have fallen behind on my updates.

Overall, things are going very smoothly here. I left the hospital right on schedule Thursday morning following the surgery. I'd had a brief bout with a fever and some bad congestion/crazy sore throat in the hospital, but other than that, all went well. The surgeons called the whole thing a success. My jaw got moved 12mm, which is a bit more than they were expecting. By the night of the surgery I could already tell how much easier it was to breathe. And I must say I'm a little irritated that all of you readers have been keeping this secret for so long. *That's* what its like to breathe easily? Sign me up.

Max's mom came out for the first week following surgery, and she was wildly helpful (as have been my friends Jo and Eric and Max himself.) As I'm on a liquid diet (le sigh,) we tried many new soup recipes in our fancy new blender. I have to eat either through a special medical syringe or these odd little feed bags with straws built in. At best I can only open my mouth about 1/4", and just this past Thursday the doctors had to put the (rubber) bands back on my braces, so even that is gone. At least I got to shove some of Mags' halloween M&Ms in there before they banded me back shut (they really *do* melt in your mouth!) The all liquid diet is starting to get old for sure. Have already tried blenderizing pizza (so far unsuccessful) and an oatmeal chocolate chip cookie (not terrible, but a nighmare to clean out of my mouth.) Thanksgiving will truly be an interesting exercise in blender cuisine - I'm getting pumpkin pie even if it ends up being intravenously!

The pain has really gone down, which I am of course grateful for. I was sent home with a bottle of Oxycontin which got pretty heavy use initially, but that's down to only once or twice a day now. Mostly the sensation I have is a throbbing ache in my jaw that the meds don't do a ton for. There's a tight sensation across my teeth from the braces as well. My heart goes out to folks who have to wear them for any extended period of time. Mine should come off in about a month (outpatient surgery.)

Immediatelly following the surgery I could feel my tongue and upper lip, but my lower lip and chin are still completely without feeling. The hope is that I will eventually regain all of that, but no guarantees. Let's just say I drool a lot and often walk around with lunch still on my face. Recently I've started to get odd shooting sensations across my chin, which signal the nerves are starting to come back on line. Its not exactly painful, but it is distracting and definitely holds your attention. I will be trying some acupuncture to try and get those nerves back on line.

The swelling has gone way, way down since the surgery, and I was lucky in that I also had very little bruising. That will continue to go down, and I'm told it should drop off significantly once the braces are off (the special surgical braces also go into your gums, and are therefore a foreign body.) The skin across my nose, lips and chin has been stretched out from the forward movement of the bones, and are still adjusting. I woke up with an acne moustache yesterday that I am less than thrilled about. And yes, my looks have definitely changed. I'm trying to hold out until the swelling and numbness are gone to completely get the finished look, but its hard. My nose has gotten wider (expected) and my chin is definitely more forward. I'll admit *I* feel a little more 'Planet of the Apes' than I'd like, but those who have seen me assure me I look fine. Like I said, waiting for the swelling to go down.

So yes, my days are filled with sleeping, drinking fliuds and 'eating'. Mostly sleeping though. Sleep filled with crazy technicolor dreams, and some vivid nightmares too. I sleep in the living room in my $15 recliner purchased especially for post surgical recovery (I have to sleep elevated.) Got my blankets and water bottles and remote and kleenex all close at hand. Have already polished off the entire two season set of 'Rome' as well as all of Season 3 of 'Weeds' to date (I have to watch things that aren't too funny or my face splits apart and I am in fierce pain.) Finally got my hands on a loaner laptop to entertain myself with as well (when I am not sleeping. Have I mentionned how much I sleep?)

I can kind of talk, although now that the bands are back in, I kind of don't bother. It was better without them, although I'd tire my jaw out quickly and make everything hurt. The braces also tended to rip up the inside of my lips pretty badly too, although I've since gotten dental wax to cover the sharp bits. It works pretty well, but pieces sometimes break/melt off while eating and then float around in my mouth, eluding capture. Then I start to imagine pieces of my skin have fallen off and are floating around in there and I get grossed out. Soup, anyone?

I'm also very happy to report that Mags appears to be taking all of this in great stride. She hasn't even so much as blinked since I've come home from the hospital, for which I am very grateful. We tried to prrepare her as best we could before the procedure, and it appears to have paid off. She is always very gentle around me, and constantly comes up to give me hugs and kisses. Mostly it makes her laugh to hear me try and talk. One of her new favorite games is to have me read so she can laugh when I stumble across the letter b,p,f,m,v or w. She even tried to take me into school so I could talk in front of the kids and she could show them how silly I sound. She eyeballed it oddly at first, but now Mags argues about who's turn it is to eat/drink out of the feeding syringe. That's my girl.

I've still got a very long road ahead of me. Frustration has already started to rear its head in a few ways: eating, tiring easily, adjusting to my new look, loneliness/boredom. I'm not a terribly patient patient. And hoping everything continues to go smoothly, it still may be a full year before I can completely open my mouth fully and chew normal foods again. But I'm trying to look at this as an oportunity for positive thinking, plus its *very* easy to be grateful every time I take a nice deep unrestricted breath.

So thanks to everyone for checking in and your warm wishes, and hopefully I'll be mumbling to you all again soon. :)

Thursday, November 6, 2008

I Forgot to Mention

Tuesday afternoon was also the first time I saw my face. Looked up and saw myself in a mirror when I wasn't expecting one. Even after having seen many many photos of others post-op looks, it was still a shocker to see it on my face. Swollen, very chipmonk-y. Only really recognized my eyes. Incredibly startling, if not oddly fascinating.

Oh, and almost no bruising to speak of. Taking the arnica pre-surgery really did the trick.

Wednesday, November 5, 2008

Tuesday - ICU and a Public Room

My first night in the hospital went pretty well, all things considered. One nice thing about ICU is that its nice and quiet. Its a semi private room in a secluded (ish) part of the hospital. Gotta love that.

I didn't really sleep that well, but wasn't that surprised. Always someone coming in to test your 'vittles', as I liked to call them. Mostly I just can't sleep while sitting up, and that's pretty much what you're doing. Luckily Joj had also gotten the nurse to figure out how to lengthen the bed; between sliding down the mattress and just being tall, I literally had had my feet hanging off of the bed at one point when I first arrived in ICU. Any time I'd woken up I'd hit the morphine button, too. Always helped somewhat.

Tuesday morning they got rid of the catheter (which was good 'cause it felt really f***ing strange) and also the circulation socks so that I could start using the toilet by myself. Always a bit of a challenge, especally with all those wires, but already doable.) The nurse also showed me how to use the little suction wand, as I was soon off to a regular room and would not have a nurse all to myself (Dammit. And just when I'd gotten the knock-on-the-bedframe-for-help code all worked out with my nurse.) Its pretty much the same as the one you use in the dentists office during a normal cleaning, except that instead of for spit, this one is for the blood and mucous that is starting to drain down your throat and pooling in your mouth. All normal and all - your sinuses took a beating with the anasthesia and the cutting and all - but still pretty ewww. I also learned how to start rinsing my mouth out with a saline solution: squirt the solution into your mouth with the handy dandy syringe (soon to become my new best friend) whilst simultaneously sucking it out with the sucker. Very important to keep the mouth clean.

Husband was already at the hospital when it was time to be moved to my new room, so I have a witness! when I say it was like the equivalent of a slow-motion Mr. Toad's Wild Ride. Seriously. The nurse, or attendant or whoever must've banged into at least 3 separate stationary objects on the way from point A to point B. He was very slow the whole way, but he could never seem to correct for the slight left pull the bed had. >BANG<>BANG<>BANG< style="font-style: italic;">All went well! he cried. It was a great success! You look beautiful! We got more movement than we hoped for! All very reassuring and helpful -- that is until he pulled out a shank of my hair from the top of my head whilst trying to remove that chin strap. Gaa! Much eye watering ensued.

I was also encouraged to start trying to take in fluids on my own with the syringe at this point, as well as getting up and going for small walks around the wing. Movement encourages circulation and will help you feel better! You need to stay very hydrated and get used to the syringe! So I did, and I did. Both things went very slowly, but were successful.

I was (hair loss aside) definitely more uncomfortable on Tuesday. Either the pain was going up, or more of the anasthesia had worked its way out of my system, but it was a bit harder that day. The self administered saline spray helped, but there was definitely congestion starting that hadn't been there Monday (again, normal.) Some post operative swelling had started in my throat as well. Not real fun. It didn't help that they were doing construction directly outside of my room either. Like hammering. Metal duct work. Power sanders. It was a bit ridiculous.

Bedtime came and I got fresh ice, rinsed out my mouth, hosed out my nose and sprayed in some antihistamine -- everything I could do to help ensure a good nights rest.

Boy, that was one of the worst nights of my life.

A comfortable position? Could not find it. Ice? Pokey as ever. Breathing? Ummm, I could barely do it. My throat swelled to what felt like nearly shut, and no matter how much I continued to spray saline up there, my nose was mostly blocked. This is not good as breathing through your mouth when it is banded shut and swollen to boot is not an option. My throat hurt so bad that I briefly believed they had actually gone ahead and pulled out my tonsils, it was such a localized pain. I woke up over and over all night long, never more than 15 minutes of sleep at a time. I cried all over my nurse in frustration and exhaustion. And to make matters even better?/ Worse? I finally got a new roommate -- at 1230 am. And then for 90 minutes there was nothing but a steady stream of nurses and machines and family members and light and you name it. And remember how they'd extended my bed because I was tall? Yeah, well, they retracted that quick enough once they had to start bringing in new person and new person equiptment -- and then they didn'y put it back! Insult to injury. I've never disliked a faceless person as much as I did that person.

I hated my IV that beepee annoyingly every time I bent my arm wrong, I hated having to schlep all the wires with me to the bathroom, I hated coughing up blood clots and having them get trapped in my mouth, I hated that my lips were completely dry -- I hated everything. I was exhausted, in pain, and wished I'd never done the surgery.

Next installment: Wednesday, and progress!

L'Hopital and ICU

Surgery was scheduled for 830 am Monday morning. Husband, Joj and I headed out two hours prior as instructed so as to adequately give ourselves plenty of time to hang out and do fuck-all at the hospital before surgery. I listened to my deep-breathing relaxation cd, letting my body slowly relax and get heavier the whole way there -- that is except for my right hand, which was busy brushing my teeth while we drove. Joj giggled.

I was surprisingly calm while waiting around and in prep. I had brought a fistful of sudokus to distract me (worked great for the pituitary surgery last year), but found I didn't need them. Partially I think it just helped knowing how pre-surgery would go at that same hospital, partially I think it helped that I'd gone to bed late the previous two nights, had gotten up very early that day and still had some Ambien in my system, and partially I KNOW it helped having folks there to distract me. I wasn't exactly thrilled to be there, but at least this time I didn't freeze in parallyzed fear, which was nice. Anyhow, we hung out, I got a sexy cotton gown and an IV, I did a little deep breathing, and soon it was time to go. I did start to freak out and tear up at that point - I was scared of what it'd be like when I woke up - but then nthe nice anastesiologist gave me some happy juice in my arm and suddenly going for a ride down the hall in the bed seemed fun. Whee! I remeber crawing onto the operating table, getting lined up the way they wanted me to be, and then someone turned the off switch.

I'm always a little - ok, a fucking *lot* scared of anasthesia as I've had some really hard times coming out of it in the past. But I *do* love how it makes 5 hours feel like its been compressed into a 15 minute nap. Anyhow, the surgery went off without any hitches; no fouls, no extra innings. I did have some nausea and was not thrilled about my bed being moved, but it wasn't terrible. I was super groggy. My head was strapped with a bunch of stuff, but I could sort of mumble out the occasional demand. I had an IV in each arm, and a catheter, and a button to self administer morphine (joy!), and those inflating circulation cuffs on my legs. I wasn't going anywhere.

Husband and Joj tag teamed me for about 30 minutes every 2 hours to make sure I was getting everything I needed. Mostly during this time I slept, or at least dozed. I was comfortable and the nurses were friendly and gentle and attentive, but Joj did fight the good fight for more blankets at one point. A true friend. Not surprisingly, Husband made friends with the woman keeping watch at the bed next to mine; her daughter had had the same surgery by the same surgeon immediately after mine. (I'd say small world, but really, it *was* the facial post op ICU.) More than anything I wanted him to shut up because I was trying to sleep, but I didn't have the energy. When he came back at 10pm with Brother-in-Law in tow, I *did* kick them out.

I could grunt things pretty quickly post surgery, although as expected it was very hard to understand me. Try talking with your jaw clenched. Now try it while pretending that your lower lip and chin don't exist. Its a challenge. Oh, that reminds me: immediately post surgery I had all feeling in my tongue and upper lip, but yes, the chin and lower lip might as well have been cut off for all the sensation they had. Dead numb. I had ice packs strapped to my face, which felt unusual, but you could already feel the pressure and swelling from the surgery and things being moved/stretched around. I also had a huge band that went under the chin/over the top of the head, so there was a lot going on on my head. I also used that morphine drip every 15 minutes. Didn't completely make the pain go away - nothing does - but brought it into tolerable levels, though.

The last thing I remember thinking as Husband and his brother left at 1010pm (other than, "Why did they think that was a good idea?") was how well I could breathe. Laying there, semi-reclined in the bed, I could just feel the air rushing down my throat. And this was breathing entirely through my nose! And when I swallowed - albeit very awkwardly - I didn't feel my throat touching anymore. It was truly amazing. I was exhausted, I couldn't get comfortable, the ice pack weighed about 20 lbs and the ice was poking me, I had no idea what I looked like and was frankly pretty scared of what the future would hold, but the fact that I could tell so readily and so quickly how much better my throat was was a huge boon, and I felt better over all for it.

Tap, Tap, Tap

Hello? Is this thing still on?

Yes, hooray, I made it back, and lest you be afeared that something went horribly wrong, I came back from the hospital right on schedule last Thursday. I've been unconscious most of the time since then, but I *have* been at home and things have been progressing pretty nicely, I think. I'm going to do my best to fill in the hospital stay and the last week here at home, but it might be a bit choppy here and there.

I'll do my best.