Water is important.

You probably already knew that, but I was reminded yesterday how important it is.

I tried to do what my doctor suggested. I tried to drink only liquid thicker than water in order to avoid aggravating the friend in the roof of my mouth.  I lasted one day.  There is a limit to how much Ensure one can endure though and soup and milk have started to wear out their welcome too.  It felt impossible to replace the amount of water I drink - which is not small - with thicker fluids.
The longer I went without water, the grumpier I got and the harder it was to concentrate and the less energy/wherewithal I had to prepare other food and prep syringes and wash syringes and measure meds, etc.  By the time 7pm rolled around, I was a mess - climbing one set of stairs winded me, my heart was racing, I was experiencing complete blackouts that last tens of seconds and several other symptoms of mild dehydration.
Thankfully, Dave saw this was not going well and quickly put his MacGyver skills to good use, building a contraption that allows me to trickle water into the back of my mouth and down my throat, bypassing the need to swallow, assuming I move the syringe plunger VERY slowly.
I also have to give a big shout out to Casey who put me on to thickened liquids, which are exactly what they sound like.  Dave ran out after the kids were in bed and bought some thickener for me after she explained how it worked.
This morning, I spent an hour getting about 1 cup of fluid into me. The thickener worked a treat when added to fruit punch. I am very sensitive about textures, so I was skeptical, but when chilled, it is the same texture as a fruit cocktail or a slushy, if it were smooth. This in combination with Ensure and water made for a good start to the day.
As a result of the kind and creative souls in my life, today has been much better.  I can already say quite confidently that I feel more energized and can think clearly. I can move around the house without taking breaks to catch my breath or regain my vision.  I'm considering reading a book, which I couldn't do yesterday - I tried.
Next goal is using this new approach to get me to next Wednesday when I see the surgeon.

Using the water dribbling contraption while drying my hair.

Looking tired and puffy, but at least I've got good hair :P  *Ha*

A week and a day aka there's a hole in my bucket...err palate

So you know those times when things are going really well and you're waking like Leonardo DiCaprio in that meme...you know the one....and then something happens to take the wind right of your sails? That was today, friends.

Things were stellar yesterday morning - I could breathe FINALLY! I was drinking large quantities. The swelling had gone down significantly.  I still look like an extra from The Walking Dead, but there was definite progress.

Yesterday evening, I noticed something odd.  When I drank water, a tiny bit dribbled out of my nose.  This struck me as odd, but not emergent, so I decided I would call the surgeon's office this morning to get some feedback on it.  

This morning, the amount of fluid that was traveling between the two was slightly higher and it was starting to become uncomfortable.  I still wasn't worried, but made a point of calling as soon as the office opened.

After some backing and forthing, on the phone with the office, it was decided that I have a fistula in my palate.  That is to say, there's a hole where there oughtn't be.  It is likely quite small.  May even just be that a membrane, while healing, has become thinner than it ought to.  Either way, not something that should happen.  I expected when the nurse said that "the doctor will call you back and he may give you something for it", we were talking about a medication or an exercise.  What I was not expecting was the direction to not drink water or thin fluids for the next week and hope it heals itself because otherwise I will need more surgery to repair the hole.

To say I am crushed would be an understatement.  This feels like a giant setback to me.  I am going to do everything in my power to keep anything from permeating that hole/membrane this week, but I am also not feeling terribly hopeful about it.  Things don't just "fix themselves," in my experience.

I am concerned about hydration.  I drink a lot of water (see blog posts re: NDI) and kind of hate the Ensure, so I am not sure how this is going to go.

I'm also frustrated because this shouldn't have happened and likely wouldn't have happened if it weren't for some particularly rigid staff at the hospital and their "my way or the highway" philosophies around certain aspects of aftercare for this surgery, many of which contradicted the doctor's directions and those in the written documentation I received from the hospital.  I had begun drafting another post addressing this yesterday, which will be broadly about self-advocacy and readiness in patient care.  I will go into the reasons for my frustration more there, but for now let's just say there is some baggage attached to this bit of shitty news.

Here's an updated pic....I can almost smile and I almost have cheekbones again, guys!

Day 46 - Ugh #2

I've been rather quiet partially because September start-up is always chaotic and partially because nothing I have to say is good.

Initially, I was doing alright with work, despite my jaw. The slight increase in irritation that I did experience, I chalked up to increased use. When I spoke to the orthodontist about it at my last appointment, nearly two seeks ago, he said that everything looked alright.

Since then though, things have continued to get worse. The swelling is pretty significant again, inside and out. It has swollen even just tonight. The tingling and feeling is no longer just in my chin. Now, it is all over my jaw bone. I am pretty concerned that I have an infection of some sort.

Add to that the fact that I have a virus and I have been feeling pretty miserable.

The other thing that I've noticed and that may be of interest to people considering this surgery is the decreased range of motion in my neck and shoulders. Both had been sore for a while a few weeks ago, but in the last week or so, I've noticed that I can't turn my neck the amount I usually could. It is similar to what I experienced after the car accident back in 2000. I am going to ask about physiotherapy.

I am going to see my surgeon tomorrow; I'll have a more thorough report then.

Day 32 - This is a little disappointing

I seem to have regressed again :( My swelling has about doubled. I am in enough pain to take Advil a couple of times each day. The feeling is still coming back in my chin, but the swelling and pain are keeping me from being comfortable and using my lips properly.
I am getting cranky about the whole thing, honestly. I am seeing my orthodontist tomorrow and I am hoping he will be able to shed some light on the situation. I really hope that it is short-lived because it is making my job, sleeping, eating and just generally existing rather less pleasant.

The glamour shot for the day.

Day 30 - Back to Work

The new semester starts tomorrow. I am not entirely sure how this is going to go, given that I am still pretty difficult to understand at times and am in a lot more pain than I was last week because of the nerve regeneration in my chin. Only time will tell, I guess.

In the meantime, I continue to try little bits of new solid food. I am changing my elastics one to two times each day now and, while it still causes my face to ache, it isn't like it was.

My swelling is sitting at about 10% of the maximum it was. That said, it flares up with activity. For example, when we went for a walk last night, the swelling in my chin and cheeks about doubled in size. I am hoping this lets up soon since I would like to start in with more physical activity - I am looking to do zumba class through the fall and winter.

Anyway, otherwise things seem to be progressing gradually. Here are the pics:

Day 24 - Mixed bag

It has been a pretty ordinary weekend in terms of how I feel. My face is still uncomfortable and the swelling/sensation fluctuates with irritation (like putting in the elastics). I'm still kind of tired all the time and have been struggling to stay warm (the house was 26 degrees last night and I was huddled under a blanket because the breeze from the ceiling fan was giving me goosebumps). I have been gradually incorporating solids into my diet - I had Smitty's pancakes and a milkshake last night for supper and today I indulged in rice and minced chicken doused in my creamy mushroom sauce. I topped it off with a mini peanut butter cup, which was, to be honest, to die for.

Isabel's birthday party was yesterday. It went really well; the kids all had fun. The cake went over *so* well. The trampoline is an absolute hit. I am pleased.

Today, something kind of crappy happened; Jack Layton, leader of the NDP and all-around inspirational guy died at the age of 61. I wouldn't normally be moved by this sort of thing (the death of a celebrity/politician/whatever), but this has moved me. :(

Anyway, here are the pics.

Day 19 - Regression

Boo! For some reason, some of my swelling returned today. I am puffier in through the bottoms of my cheeks (more on the right than on the left side). I also feel like my lips and chin are puffier.

To be honest, today has been rather crappy on the whole. First, I tried to nap because I am finding I am tired a lot, but that just ended up in me being groggier and crankier than I was to begin with. Add to that the five calls I received from scam artists (four of which were from the same company) and the fact that I have a ton to do to prepare for Isabel's party and absolutely zero energy to call upon in order to get it done and I was a bit of a crank-pot again today.

Some pictures of the Puffinator:



PS: Everyone can be thankful, I am going to get this mop cut on Friday. I simply can't take a single second more of the tufty mess.

The state of things at 2 1/2 weeks

It has been brought to my attention that I haven't really updated much on how I feel lately and, in the interest of keeping this useful for future patients, I figure I ought to keep a running commentary or symptoms, related sensations, etc.

A lot of what is going on right now has to do with the diet. I am down to about 117 pounds from 130 (I am usually around 120, but held onto about 10lbs after having O so that I didn't fade away to nothing during this recovery period). I have been eating as well as can be expected - five to six small meals each day of various foods. That said, I am still feeling the effect of the lack of fuel in my body - I am always tired and always cold. I am also having low blood pressure head-rushes of epic proportions; the kind that absolutely blind you and leave you grasping for a solid hold in order to keep from falling down. I haven't had them like this in many years.

The other significant aspect of recent days is the ache. Since the addition of the elastics, my face and head have constantly ached to some degree or another. I've been taking Advil every day around supper time, just to get through the evening without turning into a raging bear.

Other minor things: I've had to apply wax to some sharp bits because they've been irritating my healing mouth. This took some skill - get the wax on there without poking the stitches or shifting anything and, of course, without opening my mouth. I've been *pissed* off to the degree that I nearly threw a temper-tantrum comparable to Orin's because eating is such a challenge at times. There is still some subtle swelling in various places, which I understand will go down over the next few months. The bruising is gone entirely, I think. My gums, which were zombie-white immediately after the surgery, are now a lovely shade a pink.

I think that about sums it up.

Day 13 - Clean Bill of Health

Well, I've been to see my surgeon and my orthodontist and both have been very pleased with my progress.
The surgeon said that all of the hardware was where he'd left it (apparently, it can shift post-surgery), all of the incisions are healing up nicely and that I am am "a superstar" at keeping my mouth clean. He wants to see me again in a month. I think I will ask for copies of my xrays when I see him next because they were really something else - both the difference in the before and after and the sheer amount of hardware they've used to make the changes.
The orthodontist visit today involved changing the top wire and showing me how to change the elastics. I am truly flabbergasted at the fact that I am supposed to take the elastics off to eat (still can't chew anything, but can eat soft food that is blended enough to be considered "pre-chewed") and brush. I told the assistant and ortho that I don't know how much of that I will be doing this week since I don't feel terribly comfortable, but who knows what tomorrow will bring.
As for my general, overall feeling, I am doing well. The swelling continues to decrease (you will see a difference between the pic from two days ago and today's pic). The bruising is all but gone. Overnight last night, I got back a who whack of feeling in underside of my chin and along my jaw bone. It was so significant that I noticed it immediately upon waking up. There is still a rather large swath in the center of my chin that is numb and my lower-lip is still mostly numb, but the feeling is returning much faster than I'd have expected.
Given my improvement and the good words from the docs, the in-laws are heading home tomorrow. I understand their draw. It is tough being away from your comfort zone. We will miss them, but it won't be long before Courtney and Spencer are here visiting and school starts and my course and Isabel's dance classes start. Time will fly and, before we know it, it will be Thanksgiving. Time flies when you're having fun :)
Today's pics:

Day 10 - Culinary Adventures

Today was a day of experimentation. I started off by re-trying the soup that I mentioned yesterday again today. With more energy and knowing what to expect, it went much better.
With that under my belt, I decided to give butterscotch pudding a shot, sipping it off the spoon, into my mouth. This was messy business to say the least and I found myself scraping food off my mouth and surrounding face the same as I do for Orin. Hehe. I will probably leave things of this density for a little while longer because it was tiring and may have created mild suction in my mouth - not a good idea.
I wasn't deterred altogether though. For supper, I decided to try a smoothy/shake. I mixed up 250ml of chocolate milk, 1/2 a banana and 2 tbsp of peanut butter in the blender. It was alright.....the peanut butter gave it a bit of a texture because, while it is labeled "smooth" peanut butter, this brand is a little grainy, which was off-putting for someone like me (i.e. fussy about texture). I also learned that frozen fruit both blends better and brings a little extra chill to drinks (I had to put ice cubes in it to chill it enough to make it palatable). Overall, a good option. I may try it with ice cream next time to make it more milkshake-like.
Swelling is going down still....although the changes are subtle now and it can be flared up if I talk any great amount. If I had to put a number on it, I would say that my swelling has reduced by about 65% from the worst. The bruising is fading very quickly...I have small pea soup-coloured patches on my lower face and neck and some dark mottling around my eyes and chin and that is it. I am feeling more inside my mouth now, which means more to worry about. Every time I feel something, I worry that I've damaged something.
The only feeling of real concern is a familiar one, surprisingly. When I had my palate spread, there was, for a long time, a feeling of flexibility and fragility and sometimes even small shooting pains in it. I didn't expect this to return because, my understanding is that they didn't do any work on my palate (beyond likely some minor bumping while they worked on my top jaw). I am a little befuddled by the return of these feelings and will be mentioning them to my surgeon when I see him on Wednesday.
For now, here are some photos:

Day 9 - Home Sweet Home

Don't get me wrong, I am eternally grateful to my sister and to Jane & Moe for the use of their spaces and even to the Dartmouth General Hospital and especially to my mom for spending more than a week of her vacation this year caring for me. Seriously, she didn't have to and it means a ton to me that she did.
All that said, my friends, I cannot tell you how elated I am to be home. My bed is so comfortable....it might as well be made of marshmallows. My children are angelic and perfect (this will probably last until bed time ;) ), my pets are the most delightful, well-mannered animals on the face of the planet.....you get what I am saying. It is that wonderful feeling of returning to your comfort zone after a time out of it, sometimes, as in stressful situations, WAY out of it.
The kids' reactions were better than I expected actually. Orin had a look of immediate recognition when he saw me, but also a definite sense of hesitation. He toddled right over and kind of coyly, sweetly, quietly asked to be picked up. I put him in my lap and almost immediately, he leaned into me, looked up into my face and smiled. After about twenty minutes, he was running around, plopping in my lap instructing me on the names of all of my belongings and species of animals that we have (he now calls the dog "dog" rather than "cat", people....can I get a Hallelujah!). Isabel was out grocery shopping with her dad when I arrived, so when she came in, she smiled right away, walked over to me, wrapped her arms around my legs and strung this all together, "I won't jump on you, mom. I'll be gentle. I love you so much. I missed you." She's been a right little mum to me, bringing me her friends to comfort me, helping me pour soup, grabbing a face cloth to mop up soup that I got on my shirt. Truly, heartwarming.
As for me, I feel much the same as I did yesterday. This is the first day when I haven't felt that the swelling and feeling in my face haven't changed. The bruising is fading already, which surprised me. Otherwise, I am feeling pretty similar to yesterday. Hopefully, tomorrow will bring with it a little more energy and a little less puffiness in the chin....it just still feels...well...gigantic.
Oh! I tried one of the soups that I bought today....V8 Cream of Broccoli. It is good. It has more substance to it than I was expecting, so I may need to hold off on using the rest for about a week because I can't quite manage the small chunks of broccoli yet, but the taste was really good. I was pretty impressed.
Pics below were taken while resting in my own bed before supper :)

Day 8 - A field trip

I decided I wanted to get outside and do/see something today. I am getting energy back every day (even though my sleep is diminishing with the discomfort brought on by returning feeling) and wanted to do something today. So mom and Mike took me to a little boardwalk on the Riverview side of the Petitcodiac and then to the Victora Park Craft Fair. We had a lovely time and while, yes it was tiring, it was rewarding to get out for a bit.
We also made a point of hitting Walmart and Sobey's in our quest for variety in my menu choices. We picked up a fruit/veggie cocktail that claims to taste like strawberry/banana fruit punch and two kinds of soup. I'll review them when I try them.
I think the only other big news of the day is that I have successfully drunk from glasses all day today (meaning, not only did I consume it, I didn't wear any of it either!!) The swelling in my cheeks went down quite a bit again over night. The chin is still swollen and tingly, but it seems to be coming around gradually as well.
Before I go, let me tell you a fun story....about an itch you can scratch. Not your regular every day unscratchable itch though....nay nay. From what I gather, the feeling in my chin is coming back in layers, maybe from the outside working toward the outside layers of skin. Well, my chin is itchy, but no amount of scratching on the outside is relieving that itch. It is lost somewhere in limbodermis, irritating the crap out of me. So, those who are simply scrambling to reach the center of their back, consider yourselves lucky ;)
Below are the glamour shots...

Day 7 - The Rundown

The difference a couple of days can make is really quite amazing. I feel far better than I expected to at this point and would certainly never have guessed three days ago that I would feel this good today.
Don't get me wrong, I am still tender and stiff from swelling and bruising. I still tire pretty easily (considering my usual pace, I am running at about the pace of an 80-year old....lots of resting between activity) and I am still trying to get a grasp on how much I need to eat to keep my energy a little more regulated. But.....
I can hold my head up without tiring or increasing swelling and, as a matter of fact, it seems to feel better when I do that than when I lie down. I actually had a hard time sleeping last night because I couldn't get comfortable. I can walk around the apartment with relative ease and stand for a little longer than I could yesterday. I didn't take any pain meds yesterday until bedtime and, as per above, that didn't seem to help keep me comfortable, so I probably won't bother tonight. I am laughing and telling jokes and I've noticed a distinct, gradual change in my tone and type of posting on Facebook over the course of the last week, as I regain my energy and vigour. Our bodies are really quite amazing when you consider how quickly they can come back from something so traumatic (physically, that is).
As a side note, I am growing tired of chocolate instant breakfast and tomato soup, so I am opening the floor to suggestions. Items of note: I can't do yogurt. I am sorry. I just can't. I prefer chocolate to fruit flavours, but will be trying smoothies (made with milk and ice cream) once I get home to my blender. I *love* soup, so any soup (especially creamy ones), including ones that can be strained or have the bits blended are definite options.

Pictures Days 1-6

Straight out of the OR, lookin' hot! :P

Day 1 - Methinks, I was feeling a little surly.

Day 2 - Hooray for the warm compress!

Day 3 - Sent home this afternoon.

Day 4 - I = tired (you can vaguely see the yellow bruising on my neck here)

Day 5 - Oh! There it is!! BAM!

Day 6 - The swelling has gone down enough that I can almost smile here...almost.

Day 3 - Ugh.

Well, I didn't expect this would be any sort of fun and I am not being disappointed.
The pain is minimal because, during the operation, there is work done on the nerves, so they turn off for a while, numbing the face to some degree. My feeling is gradually coming back, but given what I had done, one would expect a lot more pain. I am taking the lowest dose of Tylenol 3 recommended and that is mostly just to keep the bit of pain that is returning at bay so I can sleep.
The swelling, on the other hand, is plentiful and extreme. I was using ice to keep it under control for the first 30+ hours, at which time it was recommended that I change to warm compresses. This seems to be working out...the heat is reducing the swelling that is now there in short spurts, giving me brief windows of relief. However, as soon as I take the compress off either to warm it or eat or take meds or whatever, the swelling balloons right back up until, within a few minutes, my face feels like it may explode from the pressure. I have begun wondering if leaving the warm compress off in order to prevent the extreme changes in pressure may not be the better choice.
Other than that, I am doing my best to stay hydrated (drinking about 60ml of water per hour) and to eat bits here and there (had 40mls of instant breakfast at each breakfast and lunch today and am considering tomato soup for supper) and am taking all the meds they gave me on the suggested schedule (something that is hard for me, since I am not a medication-taker, as a rule).
I have been ordered to rest my jaw (so keep talking to a minimum). Verbal communication has been replaced with note-writing and the use of ASL (with which my mother and I are both minimally familiar, conveniently). I am trying to get lots of sleep - this sort of thing wipes you out, I've learned.