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!