4 Weeks Later - How am I doing?

I'm talking again!

Had my Week Four follow-up with Dr. Li. I was hoping I'd be immediately cleared for wearing my rubber bands only at night, but he wanted me to go a few more days wearing them full time. That means a liquid diet until Saturday. Not un-doable, but still an exercise in delay of gratification.

On the plus side, I'm down to two (instead of six, followed by four) rubber bands, which means that I don't have to talk through clenched teeth. It is such a relief to be able to communicate verbally again. Friends don't have to be staring right at me to read what I'm trying to say and conversations don't have to pause while I frantically get my thoughts onto the whiteboard or angle a monitor in someone else's direction.

My jaw still isn't super flexible, so I'm a little stiff while talking (above and beyond the resistance caused by rubber bands) and I still have a nerve in my left jaw that gets tweaked when I make certain movements too quickly. That seems to be getting better each day, though, so I think it's just a matter of getting everything used to mobility again.

Other than the irritation caused to my lips by the surgical hooks on my braces, that's about the only pain I have now, and it's pretty infrequent. I'm off pain killers entirely.

I do think I forgot to mention canker sores and irritation to inner lips in previous entries. Basically, my teeth push more against my lips because the entire jaw has been moved forward. To add to that, before surgery, the orthodontist puts on these little hooks (not scary, sharp things, just little nubs to hook rubber bands onto), which are a little pokey. I think weeks 2-3 were when I had the most irritation - right when the stitches were dissolving, but not all of the healing was done. It's not so bad now, but having wax on hand is a must!

Numbness continues to improve - although I kind of feel like my left chin lost a little sensitivity when I started talking. Increased inflammation? My imagination? Who knows.

At any rate, starting Saturday I can "chew" again. That means I can add non-blended soft foods like eggs, well-cooked pasta, fish, etc. to my diet. My eating schedule for Saturday is already mapped out:

Breakfast: Red Hots at the Doyle Street Cafe (Red Hots are pancakes made with sour cream in the batter - they are incredibly soft and delicious)

Lunch: Macaroni and Cheese at Homeroom (I've never actually been here, but a friend recommended it for Mac and Cheese)

Dinner: Fish with mashed potatoes - Location TBD (Maybe a home-cooked meal?)

After that, THE SKY IS THE LIMIT! Ok, the limit is probably still pretty soft, but I am excited to able to use a spoon, for goodness' sake.

The thing I'm most excited about, though, is that I find that for the first time in a very long while, I am able to concentrate on what I'm doing and even multi-task when necessary. I really do want to write a post about why things like that are such a big deal for me, but I haven't quite worked up the courage yet to put it into words. Suffice it to say that I simply haven't felt like myself for many years now - I lost huge parts of my self-identity to sleep apnea (motivation, inspiration, curiosity) and now, even four weeks after surgery, I feel these pieces slowly resurfacing.

Part of the reason I've been loathe to put into words my experience with sleep apnea is that I'm wary of coming across as melodramatic. But sleep apnea has had a dramatic impact on my life, and the changes that I've seen and hope to see really are and will be life-altering.

Like I wrote on facebook yesterday:

For the first time in a very long while, I feel like I've made it to the end of the tunnel and, instead of discovering a sputtering florescent light illuminating the way to new series of catacombs, I'm standing out in the open air. I've got about 100,000 bad habits to unlearn... but it feels good to breathe.

Recipe: Pureed Carrot Soup

Woo - two posts in one day!

This was the first soup I tried in my personalized cook-book. It was delicious. I recommend making at least the full recipe (as long as you're confident you'll like it) and refrigerating/freezing single-serving tupperware with the left overs. Less work and as long as you make a few recipes a week, you'll have some good variety.

What you need

• 2 tablespoons unsalted butter, or the same amount of vegetable or olive oil
• 1 medium onion, 3 medium shallots, or 1 medium leek (white and light green parts only), chopped
• 2 tablespoons dry sherry or white wine
• 1.5 lbs carrots (about 8 medium), peeled, halved lengthwise, and sliced thin (about 4 cups)
• 2 cups low-sodium chicken broth or low-sodium vegetable broth
• 1 teaspoon table salt
• ground white pepper
• pinch ground nutmeg
• 1-1 1/4 cups whole milk
• 2 teaspoons minced fresh tarragon, mint, chives, or parsley

What you do

• Heat butter or oil in large saucepan over medium-high heat. Add onion; saute until golden, about 5 minutes. 
• Add sherry and carrots; stir constantly and cook until sherry evaporates, about 30 seconds.
• Add broth, salt, pepper to taste, and nutmeg to saucepan; bring to boil. Reduce heat to simmer cover and cook until carrots are tender, about 20 minutes.
• Ladle carrot mixture into blender. Add 1 cup milk; blend until very smooth. Return soup to saucepan; cook over low heat until warmed through. If soup is too thick, stir in additional milk to thin consistency. Adjust seasonings.
• The tarragon, mint, chives, or parsley are meant as garnishes - you can either skip them or toss them in the blender with the soup!
• Soup is good in the refrigerator for about 3 days

Day 3 - First Full Day at Home Retrospective

Just lost this ENTIRE post when it mysteriously got overwritten with the text from a previous post. I feel like I've come of age as a blogger. AAAANYWAY, I will attempt to recreate the magic.

I know it's taken me four weeks (has it really been four weeks??) to get to the third day after surgery, but I've been feeling increasingly productive/social over the last few weeks, so I've been applying my newfound energy to other endeavors. Not to say that I'm not still tired/sleepy sometimes (I still haven't quite found a groove in my sleep schedule)... but more on that in my week four (!!??) update.

Okay, Day 3 Post-Surgery (Friday, Sept. 2nd):

I hadn't struggled with nausea at all in the hospital, but on my first morning at home I felt a little queasy. To be fair, in the hospital, they'd first supplied me with anti-nausea medication and then with antacids... plus I'd been eating mostly clear liquids. But on that Friday morning I was hungry but nothing sounded even remotely edible. I had some apple juice and an Ensure with my medication, but they tasted disgustingly sweet and the idea of drinking enough to make me full sounded terrible.

Enter the Breville Juicer:

Breville BJE200XL 700-Watt Compact Juice Fountain 

My parents bought me this sucker before the surgery and I cannot recommend it (or something similar) more highly. My dad peeled and pitted a mango, turned on the juicer, dropped in the fruit and voila! Real food! Fresh fruit is sweet, but it doesn't have that same cloying sweetness that bottled juices and pre-made smoothies have. As soon as I started drinking fresh juices, smoothies, and soups, I felt infinitely more human and my appetite stabilized.

While I'm promoting home appliances - I also needed to purchase a new blender before my surgery. I wanted something with good reviews (I wasn't interested in combating chunky smoothies post-op), but wasn't up for spending the big bucks for a mega-blender. I settled on the KitchenAid 5-Speed Blender and have been very happy with it so far:

KitchenAid 5-Speed Blender

Also on the menu that day was a delicious Pureed Carrot Soup (recipe to follow soon). Even pureed to smithereens, home made soup is about 1000% times more food-like than boxed soup, no matter how tasty the boxed soup. I think that eating home made-meals (fresh fruit juice, home-made smoothies and soups) were key to maintaining both my weight and sanity this past month. It upped both the tastiness and variety of foods I was eating, meaning I stayed interested in food - and healthy food at that!

Having people around (particularly that first week) to help prepare meals for me was vital. My parents stayed in the area for a week after surgery and boyfriend, though busy building us a house (!) made sure he always left me with a breakfast smoothie and soup in the fridge when he went off to work. I had a few friends stop by to make soup for me as well, which was so lovely.


Anyway, enough about food (for now). How was I feeling?

Day 3 was pretty much a series of intense naps interspersed with meal/medication breaks. That being said, I was still way more active than I thought I would be at this point. I got out of bed for my meals and I think I surprised a friend by being up and "chatting" with my parents when she came by to drop off some beautiful sunflowers. I even took a little walk around my back yard with my parents and posed for a chipmunk-cheeked photo op.

This is how I look with a rectangular face.

I was still on Vicodin at this point and that took care of most of the jaw pain. Icing took care of the residual aches. The hospital had sent me home with ice-packs and an ice-pack sleeve (which was GREAT - basically a long tube of fabric you could slide the ice-packs into and then tie around your head). The ice-packs were refillable with ice-cubes, but we ended up getting some gel packs. They were easier and less messy.

So jaw pain was under control, but this was the point at which my neck pain was bothering me the most. Also, though my sinuses weren't excruciatingly painful, they definitely felt like they were going to airlift me into space. Showers helped a lot with both issues, so I ended up taking three... which prompted me to purchase a shower cap... which I proceeded to use non-comedically for the first time in my life. (In retrospect, I am seeing so many missed photo opportunities...)

I guess I'd summarize my general state of being as "Groggy, achy, but generally upbeat."

I think I covered everything I did in Draft 1. Even this PS:

P.S. Ground pills are disgusting. One of my friends made a lot of fun of me for complaining about this, in particular, when I'd just paid someone break my face, but seriously. There are some Rx's that just shouldn't be allowed out of their protective coating. I even resorted to mixing them with prune juice because the strong flavor managed to overpower my meds somewhat. Desperate times call for desperate measures!

3 Weeks Later - How am I doing?

Let me see...

Shall we temporarily ignore the fact that the hospital had an out of date number for my insurance ID code? It's only a $91,000+ charge. No sweat. Right?

Yes. Let's ignore that for now.

Aaaaaaaaaanyhow.

On Monday I had my weekly follow-up appointment with Dr. Li. Everything is looking good and he loosened my rubber bands once again. My nose and sinuses are healed to the point that I didn't require any clearing. The most exciting part, though, was that it signified the beginning of my one week countdown to being able to really talk.

Next Monday, my rubber bands come off and I only have to wear them at night. At this point, that is feeling like a pretty momentous occasion.

Confession: I did quite a bit of research about Maxillomandibular Advancement Surgery and spoke to a number of doctors before deciding that it was my best option. I read several blogs, flipped through some of the research, etc. That being said, I didn't really realize until my pre-op appointment that I wasn't supposed to speak for four weeks. I knew I'd be on a liquid diet for circa six weeks, and I knew that I'd have rubber bands to keep my jaw closed, but I figured that with the progressively loosening bands I'd be back to talking in no time. So, when I was told at my appointment about a week before surgery that, even though I'd be physically able to talk, I was advised not to for four weeks... I was a little surprised.

In retrospect, it was something I should have asked about. On the other hand, I was actually pretty okay with not knowing it way in advance. It was just another thing to dread that wouldn't have been worth stressing over.

In the end, not being able to talk hasn't been nearly as bad as I would have made it out to be, had I given myself the time to blow it out of proportion.

Still.

I miss being able to talk.

A lot.

So I am a little excited about being able to hold a real, adult conversation again without scribbling on a white board. If this had been a longer term/permanent issue, I certainly would have invested in a portable electronic device either for typing, text-to-speech, or scribbling notes. As it was, my mildly (ha) retro equipment served me fine. (Yes, yes, yes - it's appalling I don't have an iPad or smart phone. Blah blah blah.)

Pain levels have been good - very consistently tapering off. I'm taking Ibuprofen once or twice during the day and once before going to sleep. After week two's follow-up appointment I developed some pain in my left jaw/ear. I think it was caused by my new found ability to move my jaw laterally. Anytime I shifted my jaw slightly to one side, it causes a considerable amount of pain. For obvious reasons, I try not to do this.

For a few days I had a consistent ache in/around my left ear, but Ibuprofen, warm showers, and gentle massage of the surrounding muscles helped. I had one bad night where the pain kept startling me awake when I inadvertently moved my jaw, but for the last few days, both pain and sleep have been much better.

Sleep has been good for the last week, as far as I can remember, besides the one pain-interrupted night. One thing I've noticed over the last few days, though, is that I'm having trouble falling asleep. I'm feeling very jazzed up when I try to go to bed, even if I'm feeling quite tired. I'm trying not to nap, I'm trying to confine what little caffeine I'm consuming to the mornings, and tonight I'm going to throw in some relaxing music as well.

There is still some numbness in my chin and lower lip, but there is now some feeling in all areas, even if it's somewhat muted. Some parts seem to be recovering more quickly, but I'm feeling more confident that Dr. Li is right to think I'll recover all sensation. My upper gums continue to be just about completely numb, but I've been told that it will be the last area to return to normal.

As for eating, I've actually managed to maintain my weight pretty successfully. I intentionally put on a few pounds before the surgery and lost a bit of that weight, but have otherwise remained steadily in my normal weight range. I think the trick has been to keep a variety of food options around at all times and to make sure I'm snacking/eating throughout the day.

This week has been a little rough on the solid food jealousy front, though. For the first two weeks I was blithely content with my smoothies, soups, and milkshakes... but for the last few days I've felt like Pavlov's dog whenever the refrigerator door opens. I can't help but imagine what crunchy goodness my boyfriend might be obtaining.

Right now I am dreaming of a breakfast burrito. Is it too much to ask for? So soft and delicious!

My energy levels definitely feel like they are improving - though I had a little bit of a setback after overdoing it last week. I was relatively active last week and over the weekend I attended a wedding ceremony and had a house guest. Though I enjoyed my weekend immensely and neither the wedding nor the house guest were particularly demanding, there is most certainly something different between vegging out/relaxing on your own and maintaining attention on other people.

After a few nights and days of recuperating, though, my motivation, energy, and attention span all seem to be increasing noticeably. Instead of watching TV or movies, I find myself more interested in working on little projects or having a friend over for a bit.

A friend recommended I keep track of my moods to see how having a good night's sleep for once affects my outlook on life.

My mood today: Grumpy for about ten minutes this morning, then mostly optimistic, upbeat, and productive. Weird.

Dr. Li says this is just the beginning. I hope he's right with all my heart.

Surgery Tip #2: Put together a collection of recipes ahead of time

Or, better yet, have a really really excellent, kind, and thoughtful friend put it together for you!

A close friend of mine sent out a call to all our friends and colleagues for their favorite smoothie, soup, and cocktail (for after I was done with Vicodin!) recipes and then put them all together into a cookbook of straw- and squirt bottle-friendly foods.

Have a friend facing a liquid diet? Make one of these.

Best. Gift. Ever.

(remember to change the name...)

My birthday was just a few days before surgery, and it was the perfect gift - everyone who submitted a recipe also wrote me a little note to go along with it. Not only was it incredibly practical, it also made me feel truly supported by my community of friends.

I'll be posting some or all of the recipes my friends shared with me on this website, but I also recommend that you send out the call for recipes (or have a friend do it) to your friends and family. It's a great way to make sure that you have a diverse diet, even if it's all through a straw, and I found it was also a great way to let people know about the surgery I was about to undergo without spamming everyone with a lot of pre-surgery information.

Trust me, you'll be happy you're not flipping through cookbooks once your jaw is rubber-banded shut.

And THANK YOU again, to the lovely folks who contributed to this project, particularly to one who organized it and the one who helped her put it all together. You have no idea how much more pleasant the last three weeks have been because of you.

Day 2 - Going Home Retrospective

After two nights in the hospital, I was discharged at around 10 am on Thurs, September 1st. My last IV was removed, I was allowed to change into my clothes, and had another delightful breakfast of broth, juice, tea, and jello (or maybe it was a sorbet?). The hospital staff filled a paper bag with giant syringes and tubing so that I might eat and medicate at home, as well as some post-operative care instructions and a pill crusher.

I was able to walk out of the hospital, which felt good (if exhausting) and then we drove to Dr. Li's office. Costa met us there, so we were a nicely sized party for my first post-operative appointment. We were shown right into a room and, once there, Dr. Li cleared my nose with a little suction tube (an admittedly unpleasant, but effective procedure). Along with his four rules, he suggested that I try to irrigate my sinuses regularly to help keep sinus output from building up. Also, since tooth brushing, even on the outside, is out of the question for the first few days, I was instructed to rinse with salt water frequently to keep my oral hygiene up. 

Side note: I had purchased a Waterpik prior to surgery, which turned out to be pretty helpful in getting food out from between my teeth. Word to the wise, though, be careful of stitches, particularly in the first few days. 

I showered when I got home, which was lovely after being in the hospital and also helped keep my nasal passages cleared.

Courtesy of being hardly 48 hours post-surgery and being regularly dosed with Vicodin, I slept a lot during my first day at home. I was pretty groggy and had only enough attention span for TV episodes that I'd already seen. We wrote up a little medication schedule, which I highly recommend, to keep on top of daily (my regular medication), 4-hour (Vicodin), and 6-hour (antibiotics) doses.

My first few meals at home were pretty basic. I think they consisted of vanilla Ensure Plus, Trader Joe's Butternut Squash Soup, and some Odwalla juices.

I very quickly started to dislike how sweet pre-made juices and drinks were and the next day I made the switch to primarily homemade meals and freshly squeezed juices. (I'll write more about this!)

My first night at home was a little bit long - my neck was sore from sleeping at strange angles, and I consistently woke up around the time that I was due for another round of Vicodin. I ended up sleeping on the couch for a lot of that night just because I was sleeping so lightly and because it was easier to keep somewhat propped up.

That being said, I was still doing remarkably well considering I was fresh out of the hospital. Puffy and sore, but in good spirits. It felt great to be back in my own home with my boyfriend and dog (who was VERY excited to see me) and no longer hooked up to any tubes or wires.

Day 1 - Day After Surgery Retrospective

On the morning of August 31st, the day after surgery, I was "freshened up" (the hospital's euphemism for a sponge bath), changed into a fresh hospital gown with some pajama bottoms, and was pronounced awesome enough to move out of the ICU (That is the technical term for not having a fever, having pain under control, and drinking enough fluids.)

That meant I got to get up and go pee for the first time and take off all those sticky electrodes they sneak under your hospital gown to monitor heartbeat, breathing, etc. Having a catheter was something I was not looking forward to but, in the end, it was one of many things that I just couldn't muster the energy or sense of indignation to care -- modern medicine is great that way. And in truth, it wasn't until they removed it that I could even tell it was there.

So, I went from this:

Notice the many many tubes and wires.

To this:

Notice the many fewer tubes and wires.

It also meant that I got a "real" meal for the first time since the evening of the 29th. I didn't get any pictures of my meals, but they essentially consisted of: Beef or chicken broth, a little plastic carton of juice, warm water for tea, and some jello.

Doesn't this meal look filling? Meal time actually made me really happy. 

I am a simple creature.

All of which I consumed using a giant (needle-less) syringe with a helpful tube at the end:

One for food and one for meds. SO much easier than a straw for the numb-of-lip.

The jello was incredibly difficult to get into the syringe, so I resorted to melting it with a bit of my tea water. I am nothing if not resourceful... and determined to eat my dessert.

Anyway, the day after surgery was a series of naps and brief visits with my parents, Costa, and a good friend.

Since the previous day I had been wearing leg circulation pads, which wrapped around my calves and contracted and expanded to keep blood moving in my lower extremities. Once I started to be on my feet a little, they removed them. I was encouraged to get up and walk around as much as I felt able, so I did a few treks down the hall and gradually upped my path to a full circuit of the wing. I had to roll around my IV stand, but it was nice to get out of the bed.

Being up and about also means that they start making you pee in an upside-down hat-shaped container so they can measure your liquid intake/output. (Sorry for all the pee-talk, just though interested parties might want to know... I'd never stayed overnight in a hospital before!)

Pain again was pretty manageable for me. My throat and ear bothered me the most at this point. The throat pain, again, was residual from the breathing tube. The ear pain was the result of general congestion and stretching/swelling caused by the surgery. I started having pre-sleep falling sensations which weren't fun, since I inevitably would jerk my head and tweak my jaw. Also, this is when my neck started really hurting - probably from sleeping at funny angles so as to keep my cheeks from banging around on the pillow. Ice and painkillers definitely helped - so say yes to them if you're uncomfortable.

I found Stanford hospital beds to be pretty comfortable as far as hospital beds go. They are designed to minimize bed sores, which is a little surprising at first (especially to any guests foolhardy enough to sit on the edge of your bed), since various portions of the cushion inflate and deflate sporadically. 

The staff also switched me from an intravenous to an oral pain killer and I was able to start taking my usual medications again - some of which they had liquid forms of and some of which they did not. There is a reason we generally swallow pills whole. Bleh.

One thing I found very odd was that the hospital happily provided me with all my prescriptions EXCEPT birth control. So ladies, you can leave any other Rx at home, but if you want to keep taking your BC on a regular schedule, you have to have someone smuggle it to you.  One of my nurses may or may not have been kind enough to crush it for me (wink, wink), but if you don't feel comfortable asking - just have a friend or family member use the pill crusher they leave near the bed and mix it with some juice in your medicine syringe. This is frowned upon by the pharmacy, but smiled upon anyone with some common sense. 

(EDIT: Before you start self-medicating - check with your surgeon about taking your birth control after surgery. I had already asked Dr. Li whether I could continue taking birth control and he told me it was not a problem. HOWEVER, I take the mini-pill: a progestin-only form of contraception, which does not carry as high a risk of blood clots as estrogen-based birth control. Your doctor's instructions will likely vary based on your doctor's philosophy, the type of birth control you're taking, and your overall health.)

Dr. Li visited me at some point during the day and asked if I felt like going home the following morning. My response was a resounding thumbs up, so he told me he would have me discharged the next day and that I should stop by his office on my way home.

So, one more night in the hospital - this one a little more quiet with just one roommate. All of the nurses continued to be unbelievably nice and responsive, and I got another surprisingly good night of sleep, considering the intermittent interruptions for dosing with pain meds and antibiotics.

I'll try to think if there was anything that really surprised me about my hospital stay, but the only thing I can think of that really didn't match my expectations was my boredom level. I guess I had thought I'd be pretty bored bumming around the hospital for two days straight, but I didn't even once flip on the TV or try to fumble through a few pages of a novel. I was pretty exhausted and my attention span was just long enough to visit briefly with my loved ones. So instead of dragging, the time went by pretty smoothly.

I'll post about my first few days at home and start adding some smoothie and soup recipes that have been my much-beloved sustenance. Also, I'll be working on a few posts about how I (finally) got diagnosed with Sleep Apnea and why I chose surgery over other treatments. I feel pretty strongly about the last couple subjects, so it might take me awhile to organize my thoughts.