August 27

Phew. It's been a hell of a day and there's a lot of info to get out there.

First of all, OOPS! I type little notes to myself as I blog so that I remember to touch on things that I want to. My notes disappeared last night, or so I thought, I assumed I had deleted them. Alas, there were some humorous e-mails and texts today in regards to my little notes at the bottom of the blog. So, just to update everyone else on the couple of items I didn't touch on yesterday, baby doll and I were trying to think of ways to use my new skills to my advantage. So, my lack of smell (although supposedly this may come back) would immedicatley qualify me as the all time winner of any fart wars I may get into, as far as I'm concerned. And Scott was wondering if I would be allowed to enter the hot dog eating contest on Coney Island since I supposedly won't choke on food now.

So, rock star, Nurse Greg fell a little in my eyes. I had a couple more accidents with my stupid urgent bladder. I was crying. It was just so frustrating and stressful. He offered diapers, I asked for a porta potty next to the bed. He said he'd order me one. Last night I had a new nurse, Stefanie. I again had an accident, cried. I told her that Greg had said he was going to order the potty and asked her to check on it. Turns out he hadn't. Stefanie had one there for me within 3 hours last night. She's now the new love of my life and the potty is working out wonderfully! Although she did make me promise to walk numerous times today. She said she'd make me go back to peeing in the garbage can if I didn't. ;-)

There was a huge entourage in my room at like 6:45 this morning. Everybody and their brother were in to see me! At one point I think there were 8 people crammed around my bed! And honestly, I can't keep them all straight. Dr Miller and Dr. van der Sloot were my original guys. Since then I also get poked and prodded by Green, O'Brien, Rosenbaum, Priya, Ryan, Alexis......plus a number of interns that hang around. Seriously crazy.

So, info is starting to blur. I believe Dr. M is still shooting for a Friday discharge. He also wants to remove the sutures from my neck tomorrow. Baby doll and I remembered to write down some actual questions for me to ask, finally. So, when Scott was here Sunday night, he yawned 4x and I felt absolutely no urge to yawn as well which is NOT normal for me. I thought it was yet another super power! But Dr. M says I should have normally yawning functionality so no idea what that's about. The second question was why the incision line splitting my face goes zig-sagging to the left but the tooth he removed to saw through my jaw is way to the right. Baby doll thought it was so that my face would go back together like a jigsaw and add more support. Dr. M said something about the bigger the piece of area affected, the faster it would heal. When I raised an eyebrow he said there really wasn't a reason behind it, it's just what he decided to to while in surgery. Um, okay. Lastly, I asked if I could use some viscous lidocaine on the gaping hole where my tooth used to be. For some reason the pain meds do not touch that owwie at all! He said no problem, he'd get something on order for me. It was funny seeing both Dr. M and Dr. V duing the same visit this morning. They usually come separately with their own group. I was happy to see them together this am.

My next visitor was Michelle, my new speech/swallow therapist. OMG. Loved her! So vibrant, and excited, and upbeat. She rocks! She spent like an hour with me and she was all over the place with info and whatnot. It turns out that the "speaking valve" they keep referring to is a tube that Dr. M placed between my eating tube and my speaking tube. I was immediately concerned that I had lost my super power to not choke when eating. She assured me that it was a one way valve that only allows air in so my super power is intact. Anyway, instead of using vocal chords to vibrate words, the speaking valve allows the eusophagul muscles to vibrate instead? Or something to that effect. And in answer to Peg's question on an earlier blog. I guess I will still sound like me but with a bad cold? I was a little surprised by that. We'll see if it holds true. Anyway, it turns out this valve continuously breaks down and needs replacing. Normally it needs to be replaced every 4-6 months. Worst case, every month but if that the case, there are things they can do to remedy that sitch. Best case, she has one patient who only needs it replaced once a year! She then had me download an iPad app called Verbally. I can type stuff in, hit speak and it will talk for me. Unfortunately my iPad's volume is impossible to hear even all the way up so I have an iPad speaker stand currently winging its way to my house. I should see it Thursday. The app is free but they have a better version for $99. Supposedely with a better selection of voices. Maybe I'll upgrade for Christmas and give baby doll something sexy to listen to. She also gave me a Type to Talk link for my iPhone and she was talking up an app called Locabulary. She said it was programmed to offer up words and phrases based on your location. So, if you're at the library or at the hospital for exampe. She said unfortunately, she thinkks the programmers have stopped working on the app which is unforunate because they were going great places. She said she knows for a fact that the Starbucks menu and Mickey D's menu are both programmed in. :-) All of this aside, I still plan on learning ASL simply because I think it would be a fun new challenge. She totally agreed with me. So, she gave me a sheet of evercises to start doing 3-5 times a day even though I'm not talking yet. She said just getting my mouth and tongue moving will be a huge help. She said that vowels are the most important sound in our language. She said there's a big difference between bat, boat, and bought even though they all use a b and a t. She said that once I really get going with my speech, I'm probably going to sound like I speak with a German accent because there are some sounds that I simply might not get the hang of, like the t-h sound. She started talking about how my current plastic collar around my stoma is temporary but she's not sure what Dr. M is going to outfit me with. Whatever it is she's going to provide me with a filter for it. Filters are good because a) they provide resistance which is what we're used to our nose and mouth doing, b) it will keep bugs from flying in there (ummm, ewww, there was a visual I hadn't thought of!!), and c) it will help keep things moist and warm which is how they should be. At this point I was getting a little overwhelmed. Her energy is amazing! So, she said her goodbyes but plans on coming back soon with props in hand and more good info. On a side note, I saw Priya at some point today and she was laughing at how excited Michelle is to work with me. Michelle thinks we're going to do great things together! Priya also commented that my cookies were fantatstic. ;-)

Next thing that happned, I was untethered from both IV poles for a while! OMG. I was so excited. I immediately rushed to the bathroom and scrubbed myself from head to toe (no shower yet, still dried blood in my hair, and not using a razor is getting problematic quickly but....). It felt so good! I even put on a pair of shorts and my own button front nightgown today. Iwas a human being! I then started rushing around the room trying to get organized because I knew I had a bunch of visitors on the agenda for today. Alas, they simply can't leave you alone enough to get anything done. The medical supply place, Upstate, had a rep there to see me. He showed me how to work the portable suctioning pump that I will be using at home and went over all the supplies they will be delivering each month and what my insurance covers and what it doesn't. My insurance actually covers a LOT. Go QED!! So, he left the pump with me and Jamie promised to be home between 5:30 - 7:30 to take delivery of a boatload of goods. I guess I wasn't kidding when I said my empty bedroom downstairs will soon be my 'warehouse' for my medical supplies. I should probably start looking at shelving....

Unfortunately, this stupid sales guy took up a lot of my untethered time and I wasn't quite ready for 
the QED girls when they arrived but all went well anyay. They brought me some beautiful fresh cut hydrangeas and I showed them the really cool speech app. Surprisingly it was Robin that suggested we try out some dirty words on it. I was shocked! They made me laugh and made me feel loved. They all wanted to see inside my mouth and had me moving my tongue around for them. Lisa asked if they had only removed part of the old flap or the whole thing. Good quesiton! I gotta ask Dr. M tomorrow! They had stopped at the house on their way to see me and brought me a much needed anil file, some new. clean blankies, and a bottle of my visous lidocaine. I highly recommend handing out random keys to your house for just these situations. Ha!

As they were winding down to leave, Kit arrived. As promised, she brought the bluetooth keyboard for my iPad. This thing rocks! It's still taking me 4 hours to type this up but now I think that's because I have so much to report, not because I'm typing with one finger any more. So Kit, stayed another hour to visit and brought me some good stories. I was super bummed to hear she's heading out of town this Friday for a week. I'm gonna miss her!

After she left, I was tag teamed by my 2 day nurses, Marjorie and Beth. They brought the dummy in and had me practice suctioning. And yeah, he had a name but damned if I can remember it and nobody else seems to know. Anywho after a couple of practice runs, I suctioned myself, it was as awful as I expected. Hopefully it will soon enough become old hat. Oh, and in case you're interested in the mechanics, I have to squirt some saline into my stoma which gets me coughing and choking and brings up any 'plugs' of crap that have formed. I then stick a rubber hose down the hole (it's like 14" long but it turns out you only thread in about 6") until it hits a barrier and then start twirling it, while causing suction, and slowly oull it back out. On the bright side, the saline usually has me coughing up most of the gunk and earlier today, I was in the bathroom, coughing on my own and brought stuff up (not while suctioning). So, my lungs seem healthy enough that I may only need to torture myself twice a day. 

No sooner was that horror show completed, the girls told me I had to move across the hall to a shared room. So we did so immediately. I'm now ensconsedvwith a roomie but I heard her doc say she could go home tomorrow so it's only for a night.

Then Karen showed up for a couple of hours and let me kick her ass at cards. Wasn't that sweet of her?? I also had both her and Kit take me for walks while they were here. Since Stefanie was so awesome to me, I wanted to make sure I kept my promise!

And lastly, Dr. O stopped by. I was in the middle of trying to get the keyboard to link to the iPad again. He immediately took a huge interest and did the manly man thing. Don't tell baby doll but he's the hottest of all my docs. I've always had a thing for redheads! Poor dude looked totally wiped out though, and he was acutally alone, which never happens. After doing the Doppler thing, he pulled over the visitor's chair and collapsed. Then we started talking. Not only does he plan on taking the stitches out of my face tomorrow but out of my leg as well. He also plans to keep me on antibiotics at home for another week. I was really happy to hear this and told him about the reinfections last year that were so horrible. He was glad I told him. He said my neck still looks pretty tight and angry. I told him it was fairly tender to the touch. He said I can take a shower tomorrow with the help of a nurse, he'll put an order in for it but I can't get my missing tooth replaced for 2-3 months. They want to make sure everything is well healed before I go messing around in my mouth. He said if I was really set on going home tomorrow he could make it happen. I told him I'd actually like to wait until Thursday when all of my supplies should be at my house. Including the porta potty I ordered for the upstairs! He was good with that. Now we need to see who prevails. Dr. O with a Thursday release or Dr. M with a Friday release. Bets anyone? My money is on a Monday release, just so you know. ;-)
 
A few other sundry items, I finally had a new IV put in so typing no longer makes my machine beep. Unfortnately it's in my left wrist, right up against the bone and hurts continuosly. Some days, you just can't win.

I'm excited to get home and start charting my neck exercises, my speech exercises, my stoma care, my appointments, etc. It sounds like just taking care of me is going to be a full time job so I want to organize the hell out of it and minimize impact as much as possible. I have more important things to take care of, like baby doll! Do you know how long it's been since I cooked for him?? The moment I'm home and get him for a night I plan on making him shrimp cocktail, stuffed mushrooms, and a big, fat steak on the grill. He had the nerve to bring a Mighty Taco cup into my room yesterday!! I'll show him....