Day 23 – Freedom

Yesterday I went to the oral surgeon’s office to be freed of the instrument of torture: the splint.   After having something in your mouth for three weeks, it’s incredible how good it feels to be free of the damn thing.  It came out pretty quickly, with just a handful of wires that had to be removed.  No pain or discomfort, just relief.  After the appointment there I had to head to the orthodontist in order to get a new upper wire (sans surgical hooks), and I stopped by a drugstore to pick up a compact adult-sized toothbrush (sorry, Cookie Monster) and some toothpaste.  At the ortho office, I brushed away three weeks of crust that had been sitting under the splint and oh was it glorious.

The orthodontic appointment wound up being a lot worse than I expected.  The problem is that I can only open my mouth about a finger’s width.  Combine that with having a wire replaced on sensitive teeth and jaws, and it wound up being pretty rough.  Nothing a handful of ibuprofen wouldn’t fix, but still not very pleasant.

So now I have no splint and a new wire.  To be honest, I had high hopes that the splint removal would be life-changing at this point, and the reality is that it’s not.  Sure, I’m able to clean my mouth and I don’t have an annoying piece of plastic making me nuts, but I had the (apparently unrealistic) expectation that I’d be able to talk well and eat.  The talking part is better, but still has a long way to go.  Imagine having the shape of your mouth fundamentally changed, and how you would sound.  All of those sounds where you push your tongue against the roof of your mouth or your teeth all have to be adjusted.  I’m sure it’ll happen, but I have to focus on it, and it will take time.  It’s also fatiguing, and the more I talk, the more I get muscle spasms, which are lots of fun.

Eating is the other thing that was a little disappointing.  It’s great that I can start eating soft foods, and last night when I had mashed potatoes for the first time, I almost cried tears of joy, but I’m not able to chew worth a damn yet.  My bite is far worse than I expected, and between only having a few teeth touching and the fatigue of my jaw, I think it’s going to take me a long time to work up to actually chewing food.  Again, something I have to relearn.  Something about being my age and having to learn how to chew is a little odd, but hey…at least I’m not stuck with liquids anymore.

Work has kicked into high gear, and while it’s nice to have been missed and in demand, people have to have their expectations managed.  It’s only when they hear me speak on the phone that it starts to dawn on them that I’m not recovered, and that it will be awhile before I am.  I mean, I’m starting to look a little more normal, but I don’t feel normal yet.  I did agree to a trip next week to NYC, but I’ll take the train, and I’ve already warned them that I may have to call it a day early if I start feeling like crap.  I was really hoping for some more time to ease back into things, but unfortunately it’s not to be. We’ll see if they change their mind if I start drooling mid-meeting…

Not too much else to report.  Still about the same numbness-wise, though I’m getting twinges in my chin that I hope mean that feeling is coming back soon.  At least then I can feel the food running down my face.  It’s strange what you start looking forward to.

Until next time…

Day 20 – Back to Work

My three week “vacation” (yeah, right) has ended, and today I started back at work.  In my case, this doesn’t mean much has changed because I work from home unless I have to travel somewhere.  The only significant difference is that now instead of sitting around watching TV and playing video games all day, I need to start going through three weeks of email (well over a thousand) and figuring out what I missed.  I’m already getting requests to travel places, but I need to see how things go later this week before I commit to going anywhere.  Right now I still have the splint in, still have a couple of rubber bands, and still sound like a drooling idiot.  That’s supposed to change on Wednesday afternoon because (drumroll) they’re taking out the freaking splint!  I cannot express how excited I am to get this damn thing out of my mouth.  Not only should I be able to speak better, I can hopefully start eating soft foods and chewing a little.  After three weeks of liquids, that’s going to be heaven.

I haven’t posted pics in awhile, so here’s a few:

Yes, I know I still look odd.  I can’t close my mouth all the way because of all of the metal and plastic, and my chin and parts of both lips are numb so I can’t really pull off facial expressions.  I usually warn people I’m talking to that I’m not pissed or nauseous, it’s just that I can’t move my face. Still creeps people out, I’m sure.  Oh, and I got a haircut a couple nights ago in case anything looks weird there.  Here’s the profile:

…and…if you dare, here’s a closeup of what’s going on in my mouth.  I figured I’d do one before getting the splint out so people could see what it’s like.  You can only see a line of plastic from the front, but that covers the entirety of my upper teeth.  It’s the bane of my existence right now.

In general, I’m feeling pretty good.  My weight loss seems to have leveled off at about 20 lbs, and I’ve been trying to eat more.  I discovered that wonton soup works out really well because the wontons are soft, and if I cut them into tiny pieces I can mash the bits against the roof of my mouth with my tongue and then swallow them.  I’ve also tried some overcooked pasta in the same way and it seems to work.  Having a little bit of texture is a wonderful thing.

My stamina is getting much much better, and I’m almost sleeping through the night, though I tend to wake at least once or twice in a puddle of drool.  Always awesome.  Swelling has gone down, though it tends to grow more pronounced as the day draws to an end, so before bed I tend to use a heat pack for awhile to help sleep.  Still no significant pain, though I tend to get occasional muscle spasms when I try to yawn.  But, overall, doing pretty well.  Big difference from week one.

Next update will be after I get the splint off.  I have such high hopes of being able to talk and eat.  If it works out, my first real meal is going to be risotto from one of my favorite restaurants.  I can almost taste it already….mmmmmm……

Day 13

It’s been a few days since I’ve done an update, so I figured I’d do a quick status report.  Recovery is moving along, though sometimes not as fast as I’d like.  The splint I have over my upper teeth is slowly driving me insane because it makes speaking and eating difficult.  I’m going to have to live with that for another couple of weeks, though – it’s a bit like having a cast on a broken bone, where you need to wait for things to set before you can remove it.  In addition to the splint, I have four (now two..had some breakage over the weekend) rubber bands that hold my jaws together in order to establish a proper bite.  The oral surgeon made reference to these being very temporary, however, so I may get them off this week.  I have an appointment tomorrow morning to either replace the broken ones or be done with them outright, so we’ll see what happens.

Swelling has gone down, though I still get chipmunk cheeks at times as the day wears on.  Not much pain, just some dull aches from time to time.  Feeling is starting to really come back in most places, though my chin and most of my lower lip is still pretty dead.  At least my lips are mostly healed at this point…they were looking pretty nasty for awhile there.  I can also shave now, though very slowly and carefully, but I was pretty psyched to lose the pedo-beard.  Now if I can just get some facial motion back so I don’t look like a serial killer, I’ll be in much better shape.

Eating…well, kinda sucks.  Still on the liquid diet, still mostly living on protein shakes, smoothies, and strained soup, though I’ve added pudding, jello, and yogurt into the mix to have a small amount of texture from time to time.  I’m down 18 pounds as of this morning, and I’m guessing that will continue for a bit.  While it’s nice to lose some weight, there are probably better ways to do so.

One thing I forgot to add last time was the stats on how much things moved.  I asked the oral surgeon to confirm, but basically my lower jaw was moved forward by 9mm, my chin by 8mm, and my upper jaw by 3mm.  Just in case your were curious.

That’s about it – more of the same for the most part.  I start work again next week, though because I work from home the transition should be fairly easy, provided I have the stamina to pull off a full day focusing on something.  I still won’t be able to talk well until the splint comes off, so that kind of limits the conference call thing.  I may add in some choice ‘MNGHHH’ commentary from time to time, though.  They like it when people add their opinion.

Next update…well, when something changes.

PS – Cookie Monster says Hi.

Day 8

I‘m starting to get beardy.  Not quite pedophile-looking, but I think in a couple more days I may be just about there.  At this point I could probably manage to shave my giant face and keep a little skin, but I still have basically no feeling in my chin and the numbness is spotty around my lips and nose as well.  It’s going to take some time to come back, though I’m encouraged at just how much has come back already.  It’s a bit of a mixed blessing in some ways, like the fact that I can feel most of my lips and just how utterly shredded they are.  I’m thinking of looking for my bike’s inner tube repair kit to patch that shit up.

People have been asking me what I eat during this period, and the answer is that I’m still kind of learning.  While I could have a milkshake every meal, I’d rather not add diabetes and gout to my current list of ailments, though I know the ladies find them sexy.  So, while a milkshake or two has been happening, I’m also doing protein shakes (far better than they sound), and in a pinch (aka when being lazy) I’ve given both Ensure and Boost a try.  While not great, they’re far less offensive than I expected.  When I want something on the savory side, you can take most kinds of soup, blend them, cook them, and run them through a strainer to get just the liquid.  This works better for some than others, but overall, not too bad.  I need to expand out to smoothies next, so I’ll be venturing out to the store probably tomorrow to pick up some fruits and yogurt.  Theoretically you can eat damn near anything as long as you’re willing to puree it and strain it out to a liquid that runs, and I’ve heard of people doing it to cheeseburgers and stuff, but I’m not that desperate.  Yet.  I *am* starting to get hungry though…

One nice thing about getting beyond the first week is that I’m able to clean my mouth again, which is glorious.  It’s difficult with the nearly complete lack of mobility, but between the waterpik and my new toothbrush I’m able to keep things relatively tidy.  And, check this out:

That, my friends, is a Crest baby toothbrush sportin’ Cookie Monster on the handle.  That’s how I roll.  It did take me a moment to decide between Cookie Monster and Spongebob, but I figured I’d stick with my muppet roots.  If I ever find a SpiderMan one, however – I’m SO gonna get it.  It’ll match my Underoos.

So, yeah, clean mouth, getting some food in slowly/messily, and having longer periods of stamina where I can sit and do a task without my brain crashing too hard.  Now I just need to get to a point where I can sleep consistently and I think things are going to be far better.

Thanks to everyone for the outpouring of emails – I awoke this morn to find that my Inbox was bursting, and I really appreciate all of the moral support.  More next time…

End of the first week

In writing all of this, I’m glad I waited to do so, rather than try to keep people up to date while it was happening.  The reality is that today is the first day that I’ve had any sort of stamina or focus to work with, so it’s nice to see some progress being made there.

At this point, I’ve been home from the hospital for 5 days, and it’s been 7 days since my surgery.  Things are getting better every day for the most part, though the recovery is slow, and I think it’s going to be quite awhile before I feel normal again.  The days have good parts and bad – mornings and evenings are generally bad, during the day I feel pretty decent, or at least relatively so.  I took these pictures yesterday afternoon so you can get a feel for where I’m at:

..and from the side:

You can see that my lips look like a hot dog that was cooked in the microwave for a week and then exploded.  Swelling has gone down quite a bit, but it still flares up as the day goes on, and my lips have been hardest hit.  Overall, pain has been manageable, and I’m only on meds at night, to try to help me sleep.  Emphasize the word ‘try’ there…it’s not easy.  I’m sleeping in a kind of recliner that allows me to sit upright because if I don’t, blood will pool and my face will swell back up again.  Having just gotten my sinuses and swelling under control, that would be a Really Bad Thing.

My jaw is not wired shut, though I do have tight elastics keeping it in place.  I can open it with some effort, but not enough to do anything of interest.  My diet for the next few weeks or so is liquid – smoothies, shakes, soups run through a blender and strained out.  Over time I’ll get to a point where I can eat mushy foods, and that’s sounding pretty appealing right now.  I’m down 10 or so pounds so far, so at the very least it’s a very extreme form of dieting.

I can’t currently talk much because of a few factors – namely, most things are still numb, there’s still a splint in my upper jaw impacting the movement of my tongue, and my jaws are loosely banded together, so I make a lot of MRRGH GAAGH kinds of noises.  It’s sometimes just a lot easier to type.

Mentally, I feel like things are getting better.  While I’m still not at the ‘Gee, I’m SO glad I did that!’ phase, I’m at least beyond the ‘Please shoot me in the face’ one.  Like I said, seeing small improvement each day is keeping me sane.

I’ll wrap it up for now, but that at least gets me current.  I’m not sure if this will be a daily thing or what, but I’ll try to post updates so that those who are interested can follow.  After all, it’s not like I can talk on the phone.

Thanks to everyone who has been supporting me through this.  I really do appreciate all the words of encouragement that I’ve received – it’s made a huge difference.

The Surgery

[Again, I'm telling this a week after the fact - just getting things up to date.  Also, as much as I try to be funny, this just wasn't.]

On Tuesday, January 24, 2012, I was at the hospital at 6:15am awaiting orthognathic surgery.  The procedure was going to be made up of three basic things: first, a Le Fort Osteotomy on my maxilla (upper jaw) where they basically cut it from the skull to slide it forward a couple mm, then cut up behind the eye teeth in order to spread the back teeth wider.  The second step was to be a Mandibular Sagittal Split Osteotomy, which is where they cut the lower jaw and slide it forward…in my case a fairly significant amount at 9mm.  Finally, I’d have a genioplasty (aka chin job) which would move a horseshoe-shaped piece of bone forward in order to make room for my tongue to move forward as well.  Everything would be held together with titanium plates and screws, which will remain in there forever.  The total procedure time would be around 4.5 hours based on the surgeon’s history of doing this.  All in the name of getting more air.

I was told it’s a major surgery, I was explained the risks, I was told it would suck, but nothing….NOTHING prepared me for what I was to experience when I came awake after what turned into a 9.5 hour surgery – more than double what was expected.  Now, of course, one hour or ten made little difference to me as I was out light a light, but apparently I have a really hard skull.  I guess that shouldn’t surprise anyone that knows me.   Anyway, I woke up in the recovery room with a tube down my nose, one up my dick, two tubes coming out of my neck, a splint wired into the top teeth of my mouth, a mask, and a bag of ice.  Not exactly comfortable.  Looked something like this:

The recovery room was a blur, but my main memory is anxiety at being able to breathe.  Let me explain and maybe it’ll make sense because it’s not completely rational.  I can’t hold my breath underwater.  It’s just not something I’ve ever been able to do.  I was told early on by a doctor that it’s something to with my nose not being able to maintain pressure, so when I go under, the water just pours in and I drown.  Why do I mention this?  Well, combine someone who knows this fact and also knows the only panic attacks he’s ever experienced are breathing-related, and when he wakes up with a tube in a nose and  mask on his face, it’s a little bit difficult to not lose ones shit.  So, most of my memory of the recovery room was trying to focus on each breath in and out and to not panic.

From there, I was put into a room, and luckily I was there by myself, so my wife was able to stay around to make sure everything was going ok.  I was rigged up to an even larger IV set complete with ‘Push Here to Trip Balls’ button.  That’s the one in the middle of my chest here:

In addition, you can see my favorite nasal tube (used to make sure I didn’t get nauseous from the blood running down my throat) as well as the Most Disgusting iPod Ever, which was a small vacuum bag that looked like a discman hitched up to the neck draining tubes.  I didn’t get any of the catheter, sorry, but I assure you it was huge.  Um.  Yeah.

Basically my night was spent trying not to panic while hammering the morphine button every time I thought of it to try to calm me down.  I wasn’t in much pain, mostly because this kind of surgery stretches out the nerves so that you go numb, but I was incredibly uncomfortable.  Thankfully my wife was there to help deal with a lot of the annoying things provided by the hospital, such as the mask filling with water from the humidifier, and the suction device that came from Stalin-era Russia.  Without her there I would have been hammering on the nurse call button all night and they probably would have just smothered me with a pillow.  Were I in their position, I’d do the same, really…

Hospitals are not exactly restful places, and there seems like an endless number of ways to be poked, prodded, and made to do things other than try to sleep.  One of the worst bits was when the nasal tube had to be flushed, which involved a bunch of water going down, then coming back out along with lots of unspeakable clumpy bits.  First shot of this was also a waterboarding moment, so I learned to hold my breath while this was going on so I didn’t drown.  The other thing is that they keep the hospital at some sort of jungle temperature that I’m sure is perfect for the Andromeda Strain to flourish, but causes me to just sit there in a puddle of sweat.

After making it through the night, I was awoken at 6am by the surgeon tearing me a new asshole.  I had refused to take some nasal spray the night before because my first attempt at it wound up being a very waterboarding-like experience (or so I assume) where a lot of liquid went directly into my lungs and I spent the next half hour coughing and generally freaking out.  One experience like that was fine with me, so I wanted to wait until the nose tube came out, and the nurse agreed.  Apparently the doctor didn’t, however, and he was pissed at me being non compliant.  But, he also removed the nasal tube, and after that I’d do all the nasal spray he wanted, so I think we left things off okay.  Now it’s just me with the mask, which I had come to adore because it blew cool, moist air at my face…the only thing keeping me vaguely sane….

Though the loss of the nasal tube was amazing, I had a new problem starting to hit me, which was my sinuses, or what was left of them.  During this procedure, they have to cut up into them, so keeping them clear afterwards is a bit difficult.  So now my nose is mostly blocked, my mouth is swollen, my tongue is swollen, and I’m trying to breathe around these impediments.  Which sucked.  And then they took the morphine away.  My wife knows this is going to lead to very bad places as I lay there wild-eyed, so she’s begging the nurses to have the doctor give me an anti anxiety med called Ativan.  She knew my main fear going in to the surgery was breathing, and had discussed this with the doctor both before and afterward (as had I), so when it took what seemed like forever to have them give me a pill crushed up into a cup, I was basically just in tears trying to cope.  Like I said, I’m not normally an anxious person or anything, but this had driven me to the edge of sanity.

Once the Ativan kicked in, and they added some Protonix to the drip as an antacid (my stomach was a mess from all the ups and downs), things were basically status quo from there until I was released.  On the last morning (Thursday), the doctor removed the dranage lines from me, and I could get rid of the Evil Discman.  The catheter was long gone and I could piss on my own, and they made me do a lap around the hospital floor to make sure I wasn’t gonna fall down and die.  Then I was released to the next step of the journey:  Home recovery.

The Backstory

(aka Why the FUCK would you DO that??)

As I sit here writing this, exactly seven days ago I was in the midst of willingly having both of my jaws violently reconstructed by a team of meth addicts with shovels and crowbars.  Or it may have been a surgical team…I’m a little fuzzy on the details.  At any rate, you’ll have to forgive me for waiting this long to do an update, but the reality is that it’s taken me a week to be at a point where I can sit and focus long enough to write something coherent without being distracted by a sparkly object.  A week is a long time, so let’s see if I can catch you up.  [Insert wavy lines here...]

 The Beginning of the Story (or: Dave’s Too Dumb to Breathe at Night)

[ADHD summary if you don't wanna read:  I have sleep apnea like one of those fat dudes that gets cut out of his house on Oprah, and had to get my jaw all kinds of messed up to help with it]

About three and a half years ago, my wife (henceforth known as Bridget or SheWhoPutsUpWithMyShit) woke me up one morning to tell me that I wasn’t breathing.  I inhaled and exhaled to prove I wasn’t a zombie, but she insisted that something was going on and that it had happened before.  Knowing her penchant for How to Kill Your Husband Shows (Dateline, etc) and her access to chemicals, I took this as a threat initially, but after she explained what happens, I took it more seriously myself.  Know how after Thanksgiving, your dad falls asleep snoring in an easy chair and does that thing where he stops breathing for a sec then startles himself awake with a gasp or a fart?  Yeah, this isn’t that.  I just stop breathing, sometimes for a few seconds, sometimes more…a lot more.  So, I can see where it would be a little scary.  After all, if I ever wake up next to a dead person, I’m gonna have a total freakout and probably burn down the house.  It’ll be haunted, after all.  But I digress…

After consulting with my doctor, who assured me I was being a giant pussy (or some other technical term), he finally relented and set me up with a sleep study.  That in itself is a long story, but suffice it to say that going to bed while having electrodes all over your head and body and an infrared camera watching your every move is not a very comfortable experience unless you have some sort of cybernetics fetish.  Freak. The initial bit lasted for a couple hours, then they woke me up from my oh-so-deep sleep to tell me that they had seen some ‘irregularities’ and that they wanted to try me with a CPAP machine, which is basically an oxygen mask attached to an air compressor.  The idea is that the pressurized air keeps your airways open so that your throat doesn’t close up and so on.  In theory, fine.  In execution, holy shit.

Before the CPAP, I had never had a panic attack before, so I couldn’t quite relate to what they were.  When I awoke clawing at the mask thinking I was being suffocated, sweating through and with my heart racing, I knew.  I had been uncomfortable with the CPAP where it felt like it was a bit of a fight to get air, but that fight was astronomically worse when I was awoken by it.  The staff managed to come in and calm me down, then offered a different kind of machine called a BiPAP.  Same idea as before, but this one uses a lower pressure when you exhale, and higher pressure when you inhale.  Again, in theory, fine.  But, same results, came out of it kicking and screaming, and told them I was done with that shit for good.  They tell me I’ll get the results in a week or so, I tell them to go fuck themselves with a  giant rubber dick, and we part ways amicably.

The next day, I get a call from the sleep doctor at the hospital.  She wants me to come in and assures me it’s not because I threatened her staff.  Okay, when?  Now.  Huh.  Interesting.

I arrive at the hospital and sit down with her for a meeting.  She’s extremely nice, but also coming across as extremely concerned.  She shows me the results of the sleep study, and translates them for me.  The main number that they use to determine if someone has sleep apnea is something called AHI (Apnea-Hypnoea Index) – translated to human, it’s how many times you stop breathing for at least a 10 second period per hour.  For a normal person, their AHI is less than 5, for mild sleep apnea it’s 5-15, for moderate sleep apnea it’s 15-30, and anything above 30 is classified severe.  Mine is 106.  That means that basically every minute of every hour I sleep, I have an episode or two where I don’t breathe for 10 or more seconds.

What’s worse is that the type of sleep apnea I have is called Complex Sleep Apnea.  There’s Obstructive, which is when your throat or something physical prevents breathing, there’s Central, which is when your heart, lungs, and brain don’t communicate well across your nervous system, and then there’s Complex, which is a combination of the two.  The doctor’s theory as to why I had such a poor reaction to both the CPAP and BiPAP is that only a part of my issue was obstructive, which those help with.  When my body isn’t *trying* to breathe and a machine is trying to hammer air down my throat, apparently it freaks the fuck out and I have a panic attack and make staffpeople cry.  Okay, I get that.  But what can I do about it?

The doctor send me back for another sleep study, this time armed with a sleep aid, an ASV (Advanced Servo Respirator), and a burly sleep study staff dude named Jeff, who I’m sure will beat my ass if I get out of line.  The theory is that this machine is more intelligent about pressure variants and will help me out better than the dumber ones.  Drop tablet, fall unconscious, get woken in the morning.  Much different experience.

Doc comes back a couple days with some good news and some bad news.  The good news?  My AHI had dropped using the ASV.  The bad news?  To 65…still well beyond where I’d be at a good place.  Crap.

Basically my options were to:

- Do nothing and see how long before my heart exploded

- Sleep with the ASV so that my heart exploded a little bit later

- Do lots of other smaller things in the hopes that the combination of them would work together

I chose the third path.  The first part of that was to lose some weight and go to the gym with a personal trainer twice a week, the theory being that the stronger my body was overall, the better my cardio would be, and so on.  That was going well til my shoulder exploded,and I’ve been a loaf since.  A story for another day.  The second part was to remove the obstructive part from the equation, with the theory that the central apnea is aggravated by the obstructive part.  That would be two things: losing weight (making my neck thinner) and having my jaw moved to open my airways.

Now fast forward (a lot) to a week ago.  After nearly three years of braces (which, let me tell you, is AWESOME when you’re approaching your late thirties), all the teeth were set up so that I could have my lower jaw, upper jaw, and chin moved forward, all of which would open up my throat substantially. Before the shovels hit me, I took a couple of photos the night before the surgery so you could see things from a Before perspective.  Sorry for the lighting (and my ugly face), but here’s a front shot:

…and a profile shot so you can see my amazing, strong chin…

…and that’s me.  Next up, the surgical fun begins…