September 16

Okay, so it turns out that being able to close my mouth is NOT a good thing. The reason I'm able to do it is because the inner cheek that Dr. V used as part of the reconstruction in my throat has started to "break down". Can I tell you how sick and tired I am of hearing that term?! He said we need to keep an eye on it. He did not say what the repercussions were if it breaks down totally. I was afraid to ask because if I hear the word surgery again I'm going to throw myself off a bridge.

He took the bolster off my neck. OMG. My neck looks so god awful I want to cry. Kit, my driver today, doesn't think it looks too terribly bad........oh hey, I'm home now so I should be able to get the picture thing to work. Hold on a sec.......

Yeah, how the hell do I cover up THAT?!? What a fucking mess.

On the bright side he took out the hateful trach tube and put my OCL back in. For the first time in a week I can breathe! He admonished me for taking out the inner cannula as I knew he would. I just didn't care. And this OCL isn't sutured in so I'm actually allowed to take it out once or twice a day and wash it. Life is so much easier when you can actually breathe!

So, I'm supposed to put polysporin on the crusty bits around the edge of my neck twice a day to help it heal. Once he did that, he said he was done. I was like hey wait a sec, what about my leg? So he looked at that and went ahead and pulled the saran wrap bandage off. We put a Xeroform bandage on it along with a couple of Telfa pads. I'm supposed to change those twice a day as well while it heals.

I then asked him about the staples running down my chest. He said he was going to leave those in a little longer. Not sure why. I'm hoping Dr. M will take them out on Friday, they're starting to itch. The staples in my leg came out on day 7, I really expected these staples to come out today which is day 7. Whatever.

He mentioned that he can't see the valve inside of my stoma. He said they sometimes work themselves out and go through the digestive system. I told him I must have been hungry. Nurse JoAnn said I might want to find something different to eat because those are the valves that are $250 a pop, out of pocket. Ouch! He didn't replace it because it's going to be a while before I'm allowed to attempt to talk. Hopefully the hole doesn't heal over in the meantime!

Lastly, he told me not to lay down flat to sleep at night. I didn't say anything but I haven't been laying down to sleep because I can't breath when I do, so hey, no problem in that regard! And he told me to try to lean to my left when I'm in bed at night.  Not sure what that is all about. Maybe to help that inner cheek not degrade any further?

I've been sleeping on the chaise since it's at a good angle to allow me to both sleep and breathe. I need my back elevated and angled as well as my neck. Babydoll was spending the night last night and didn't want to be in bed alone so, he went on the hunt for something he kept referring to as a wedge pillow.

Here's where I've been currently sleeping:

Babydoll did not find a "wedge" pillow but he did find a squishy chair:

And if you flip it the right way:

Perfect angle for me to sleep and breathe! Woo hoo! Is my man a genius or what? Not to mention as thoughtful as always. Running around the mall on a Sunday, trying to find a way to make it so that I can sleep in my actual bed at night. He continues to amaze me on a daily basis with his kindness. I now know why such crappy things keep happening out there in the world.......it's because babydoll was endowed with not only his own share of goodness but about a few hundred other people's shares as well, leaving them seriously lacking!

I think that was about it for the appointment this morning. Kit got to meet Nurse JoAnn and she sees what I mean about her. JoAnn really tries hard to be compassionate and show that she cares but as Kit put it, she has an "edge" to her.

I was sorting through some of the reams of paper yesterday that I've received from the hospital. I found an info sheet about my PEG. It turns out those bumpers ARE supposed to eventually fall off. And right after I read that I looked down and sure enough, I lost a second bumper somewhere without even realizing it. Just one more to go and my PEG will be set.

Babydoll got me set up with my local 9-1-1 dispatcher. The guy told him that if a phone call gets placed from my house, they'll send ANY and EVERYone over there immediately. Ha! I really just need one person to show up with a CPR gig for a neck breather. That would do me.

Okay, let's end with some fun stuff today. Babydoll and I def need to cancel the cruise but we still have a week together in October. What to do, what to do! We batted around some ideas last night for some stay-cation plans. He said we could hit one of the local casinos, like Turningstone. Sounds like fun to me! He also proposed that we do a little hiking at Letchworth. Another banner idea, sign me up! From my side, I'd like to spend a night in Niagara Falls. I know there's some huge outlet mall up that way and I really want to do some of the commercial stuff at the falls like the Ripley's museum and the Fear Factory. I had already booked Jamie to spend the week with the furballs so maybe my sweetie and I could skate up there for a night or two. More locally I haven't been to the zoo in forever and it's been years since I last explored Artisan Works. I also want to go get my pumpkins that week and get them carved for Halloween. I've already started loading up on candy for the trick or treaters. Hmmm. I wonder how that's going to go this year with me not being able to talk. I should probably make a sign to wear around my neck letting people know that I can't talk...........

The wonderful, fantastical Kit was kind enough to take me to Wegman's after my doctor's appointment this morning so that I could grab some ingredients for a new recipe to try out on my oh so delicious man tonight. Tonight, I'm making Paella! And if that wasn't enough fun having an all new recipe to try out, according to the recipe, I get to make it in a wok! Hot diggety! I believe I bought myself a wok sometime in the last year or two at a garage sale. I just need to go dig it out from wherever I stashed it. Meanwhile, I'm super stoked about this cooking adventure tonight! It's the highlight of my week!