September 14

Last night I was able to close my mouth! I was so excited! Mind you, I couldn't actually close my teeth, my cheek is still in the way but the fact that the swelling has gone down enough to allow my lips to seal together is still an accomplishment!!

I want to give a shout out to my Aunt Nancy in this blog. I finally sat down and went through my mail last night. She sent me the sweetest card. There's nothing better than receiving a "blank" card where someone has actually sat themselves down to hand write you a message from their hearts. Talk about a pick me up for the week! I love you, Aunt Nancy!

Things are a bit slower paced with this arrival home from the hospital. Yesterday I unpacked and I tried yet another new burrito recipe out on babydoll and Jamie. That was pretty much all I had energy for. The house could use a good once over since I've been gone a week but it's going to have to wait for me to not feel quite so wiped out.

I just sent Dr. Miller an e-mail. I've been a bad Quinny:

Hey Dr. Miller,

I am once again having some woes over the weekend and I'm now fearful that I'm going to be in trouble at my 10:00 appointment on Monday with Dr. V. Both he and Dr. O told me not to touch my neck or leg and that I should not remove my inner cannula. Well, I've done it all before Saturday was even halfway over.

- I simply cannot breathe with the inner cannula in place. Dr. V said that if I leave it out and the outer cannula gets clogged, I'm screwed because the outer cannula is currently sutured in place and it's part and parcel with the skin graft on my neck. I'm cleaning the outer cannula every 2-3 hours in an effort to ensure I don't accidentally suffocate myself over the weekend. Would kind of suck after all the effort that's gone into these surgeries that are trying to prolong my life. But obviously I feel it's worth the risk simply so that I can breathe. And I believe that Dr. V will be switching out this hateful tube on Monday and letting me go back to the OSL tube that I had in prior to the second surgery, which would make me a very happy girl.

- This morning I noticed that the bolster was half hanging off of my neck. It looks like one of the sutures has once again let loose. I wrapped a gauze around my neck to hold it in place. Right after surgery someone else had wrapped a gauze around my neck and Dr. V got hugely ticked when he saw it and immediately cut it back off. He said he didn't want ANY pressure on the left side of my neck. He told me that I should be watch dogging it and to not let anyone else wrap it. And here I am wrapping it myself! I just don't know which is the lesser evil. Wrap it and keep the bolster in place or leave it unwrapped and let the bolster fall off??

- Lastly is the leg. It was really stinging me every time I walked. I finally unwrapped it a little and it looks like the saran wrap bandage thing has started to peel at the top and has left an inch of my "road rash" out in the open. Meanwhile, it bled and the gauze was dried up and stuck to it which is what I felt pulling and stinging when I walked. So, I moistened it with a little water and got the gauze off. I then put a sheet of that Xeroform yellow petroleum stuff on it, and then re-wrapped with new gauze and new ace bandage. That only lasted 5-6 hours and then the Xeroform dried out and I was back to feeling a pull when I walked because it was once again stuck to the leg. I just re-wrapped again, this time I used a Telfa pad against the exposed part, then gauze, then ace bandage. Not sure how long this iteration of bandaging will last. Guess I'll wait and see.

So, I've touched everything, and done everything that I was not supposed to. Do you think I'm making okay decisions over here? Do you want me to do anything differently until I get in on Monday?

 

So, we'll have to see how he responds. I'm really trying to do the best that I can over here. Why do they keep sending me home with 'fixes' that fall apart? I feel like I'm being tested!

 

Even with the inner cannula removed, I feel like I can't prop myself up high enough in my bed to keep breathing comfortably so I slept on my chaise last night. I even moved the darned mister down here so that I can continue misting as much as I'm supposed to. It's pretty darned cozy down here in the man-cave I've created for myself. I don't mind spending my nights down here at all. And the chaise is big enough that babydoll and I can cuddle up on it together which is exactly what we did last night to watch the Yankees game. Daisy joined us which had me worried about babydoll's allergies but he said he was okay. And Freedom tried to join us as well. Ha! I love when 75# bubba butts seem to think in their mind that they possibly only weigh 8-10 pounds and qualify as lap dogs. I had to tell him 'no' 4-5 times before he gave up trying to join us on the chaise. I think he and Jack are spoiled with Jamie staying here so much because he has no problem with the boys sleeping with him in the bed and the bed in the spare bedroom is low enough that even with Freedom's arthritis, he can still manage to get up on it. So, they've been getting way more cuddle time that they're used to.

 

Jamie installed the light fixture in the man-cave. It looks awesome! He also did some techy setup stuff on my little entertainment area in the cave. ie: he brought over a cable (HMI?) so that I don't have to constantly have to choose whether to have my Wii plugged in or my Bluray plugged in. They are now both plugged in. He also setup the Bluray with my wifi so that I can stream Netflix. Gotta love a pet sitter who is also a handyman who is also technology savvy. I'm telling you, this guy is the entire package! I need to find a 25-30 year old worthy of dating such an absolute sweetheart.

 

Speaking of sweethearts, mine came over to see me for a couple of hours today. He took me Wegman's shopping so that I can continue to play in the kitchen for him. Tomorrow night I'll be trying out a salsa chicken rice casserole on him. Since the cruise is now out he was trying to think of something new to get me for my birthday. He decided on something but needed my permission for it. He's going to have his friend Geoff install the humidifying system on my furnace for me. How awesome is that?? He felt bad that it's not a very 'fun' birthday gift. Screw fun, anything done that makes my life a little easier with all the health changes I have going on will be considered the best gifts EVER! My friend T ordered me some really pretty ruffle, infinity scarves for my birthday. She sent me a link to see if I liked them before she ordered them. They're gorgeous! I can't wait to get them!

 

Speaking of scarves, I wore one to Wegman's today to cover up the mess happening on my neck. It looked pretty darned sharp, if I do say so myself. Although, I should have suctioned right before walking out the door. I ended up with the scarf mostly off before we were finished at Weggie's because I was having some breathing difficulties. I suctioned as soon as we got home and brought up two large clots. So, now I know. 

 

I keep trying to figure out the whole tube, suctioning, misting, clot thing. I think the reason I'm bringing up so much gunk right now is because my lungs are currently open to the elements. The elements being my dusty, furry house. So there's a lot of stuff going directly into my lungs that probably shouldn't be. I think once the stoma heals and I get fitted for whatever I'll be wearing, I will then be able to wear an HME inside my tube which is a heat moisture exchanger. This will help keep my lungs warm and moist which will allow me to cut down on wearing the mister, and it will also filter out debris and contaminants from the air before they hit my lungs which will make the clots happen a lot less often. At least this is what I've figured out in my mind. I should really ask Michelle what the whole progression of this thing is.

 

A VNS named Leigh came to see me today. Not that there was much she could do since we're not allowed to touch any of the bandaging (Ha!). She DID weigh me and I'm now up to 118 pounds. Woo hoo! She's going to send Stephanie back over on Tuesday to see how I'm doing after they've taken off all the bandaging on Monday.

 

I think that's about it for today. I was sleeping in 45 minute long increments all night long last night up until my final increment where I slept 2 solid hours. Man, that felt good! Part of my problem is that the hospital was feeding me at 6 AM, Noon, 6 PM, and midnight. So, my tummy is now trained into that schedule and starts cramping at midnight. I now have to train it back to only 3 feedings a day with 1 CBD if I'm feeling especially desperate. Anyway, the point being, I think I'm now due for a nap. :-) Zzzzzzzzzzzzzzzz...........