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!

Deja Vu....

So we are 6 days out from my last (both most recent and final...no matter what) jaw surgery.  This surgery only involved my top jaw (unlike the last, wherein they operated on both the top and bottom).  All that said, half the surgery does not equal half the recovery.
If I had to liken it to something, it might be to the intervals of a reward point program.  I haven't crossed the 1 million point threshold, where I get full-face Stay-Puft style swelling and mustard yellow bruising from my eye sockets to my underwire and pain that requires multiple narcotics.  I am, however, beyond the 500K point mark of my first surgery (having my pallet split), which included two black eyes and chipmunk cheeks. I'm hanging more around the 750K mark...bonuses at this level include a face the shape of Frankenstein's monster's, black, blue and yellow mottling where my freckles used to be and an overall look that suggests I should have gotten the license plate of the truck before it sped off.
All that said, I am improving each day, same as last time.  Yesterday, I was much puffier than I am today and on top of my regular meds, I took a dose of Dilaudid.  Today, I have stuck to my two scheduled pain killers/anti-inflammatories and have been able to tolerate the discomfort so far.  I stopped using heat/ice two days ago because, like last time, I started to find the significant increases/decreases of the 20 minutes on and off and then the time without either to be far more uncomfortable than just sticking with a moderate, but stable amount of swelling. I'm also finding myself able to eat more volume more regularly earlier in the process than last time, so perhaps I won't lose quite as much weight as last time.  Still pretty tired...sleeping a lot and resting even more.  A shuffle to the kitchen and back is enough to wind me, but hopefully as I eat more, I will become more energetic.
Overall, I feel pretty positive - I hope that things continue in this direction, but after last time, am prepared for regressions.  I found steps backward really difficult last time, so I am going to work at keeping my spirits up through them this time.
In case you are interested, some pics of the mug.

Messing around on my phone while I wait to be taken into surgery.

Post-surgery - Moved from recovery to my room, looking like  a hot mess.

Day 1 - All rigged up and looking a bit bitchy about the whole thing, but the ice and humidity made me much more comfortable than I would have been without.

Day 2 - Bits of bruising started to emerge.  Feeling tired...can you tell?

Day 2 - Flowers from Dr. Rinehart's office. A nice surprise.

Liquid diet is bullshit guys....

No really though....bullshit.

Day 3 - Ditched the humidity for a bit, but not long...not a lot of obvious difference between my appearance in these pics, but the difference in feeling over these days was significant. 

Day 4 - Finally escaping! Late in the day, but thrilled to be out all the same (can't you see the excitement in my face ;) ). 

Day 5 - A SHOWER! Not helping a lot, but I felt better at least.  Hanging out at mom's is much better than the hospital!

Day 6 - Blackie is *so happy* to finally be allowed up in the chair with me.
She acted so dejected over the last couple of days.

Day 6 - A field trip to Teacher Appreciation Day at Chapters.  Even just 1/2 an hour of shuffling around a bookstore at a sloth's speed was invigorating!

Today is the day...

Heading to the hospital for surgery....again.....in about 10 minutes.  I am dreading it, but am at the point that I just want it done so I can start recovery.

Long time, no see

I guess it is time to let the cat out of the bag, given that we are only a month away now.

I am having jaw surgery again. I really wish this weren't the case, but it is. I fell two and a half years ago, landing on my right shoulder and doing a number on it, but also jarring my jaw in the process. This led to a restart in the deterioration in one side of my jaw and no amount of anything g else (physio or bite plane treatment, among other things) has improved it. 

I will update photos and things at another time, but thought this would be a good time to update the blog since it is exactly a month and the anxiety about it is keeping me from sleeping.