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!

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.