September 18

Ah yes, it's 3:00 am and my PEG tube is twitching like a mother so I'm up 'feeding' in an effort to make it go back to sleep.

Resolution to yesterday's meltdown: turns out the Friday appointment was canceled in error. The appointment is back on and Dr. M assures me that he WILL be taking my staples out for me. I was so glad to see Stephanie from VNS yesterday. Even if it was just for a reality check. She agreed that leaving the staples in for 3 weeks was way overkill so she called Dr. M's office for me and got things hashed out with JoAnn.

I'm kind of torn about this Visiting Nurse thing. There really isn't much for them to do when they come over. They take my blood pressure, temperature, and listen to me breathe and that's about it. It's not like I need a lot of 'care'. At least not from an outsider, I'm able to do all of my own care for now. But on the other hand,  it's been nice to have someone drop by once a week so that I can hit them up with non-urgent questions like the bump that was next to my PEG tube. And it was great that Stephanie called and rattled the cages of the people who needed it, in my stead. I was typing at her how frustrating it was to stand and listen to that stupid message being left on my machine about the appointment change. I so badly wanted to pick up the phone and ask what the heck was going on but I couldn't. All I could do was sit there helplessly and wonder how I was going to straighten out THAT mess. Hence, the major meltdown.

My friend Sandi sent me a text yesterday saying "Yes I understand. I think about you often and know how much a struggle this is for you.". Of course it's very sweet that she's thinking of me but I had to snort at the rest of it. I don't think anyone can know how much of a struggle this whole thing is unless you're going through it yourself. You might think that you can picture it well and that you have some inkling, but I still think whatever your imagination can come up with is going to fall way short. I challenge all of you to put a piece of tape over your mouth for 24 hours, under no circumstance are you allowed to speak,  and let me know how you do. And remember, being mute is only one small part of what's going on with me. I currently can't drive because I can't turn my head. I'm on pain meds every 4-6 hours because hey, I hurt. I can't smell any more. I can't eat any more. I haven't showered in over a week because I can't get so many parts of my body wet right now. I'm breathing through some gaping hole in the side of my throat and still trying to learn how to keep my lung environment in balance. I wear a mister pinned to my clothing when I go to sleep at night which in turn is attached to a long plastic hose that is hooked up to a very noisy machine. I can't lay down to sleep. I'm constantly oozing gunk which I try to catch by taping bandages at optimum spots on my body but they often fail and I'm walking around in damp, slimy shirts all day long. And..........yeah, I could go on typing for quite some time.

I've added Renee to the Cast. I want to add Karen, babydoll's big sis, but she's totally bogarting on a photo for me. There's a family gathering coming up in a few weeks, maybe I can snap my own pic to use.

So, I had sent a note to Dr. Miller back on Monday:

Hi Dr. Miller,

I just had my appointment with Dr. V. and of course I couldn't think of any questions while I was there but on the drive home my mind was going a mile a minute. 

He took that hateful trach tube out and gave me back my OCL. For the first time in a week I can breathe! I can't tell you how excited this makes me!! He then looked in the stoma hole and said that my tube? valve? something was missing. He said they sometimes fall out and go through the digestive track and that it is no big deal. Meanwhile though, he didn't replace whatever it is that is missing and now I'm wondering, is there a hole in there that's going to accidentally heal up? Will you be able to re-make the hole if that happens?

He looked in my mouth and told me that the part of the inner cheek that he had used in some of the reconstruction was already breaking down (I've learned to hate that term!). Here I was excited that I could actually close my mouth over the weekend and it turns out that's a bad thing. He said we need to keep an eye on it but he didn't say what the repercussions are if my inner cheek fails. Do you know what they would be? Are we talking a third surgery?

I then had him look at my leg. We went ahead and took the saran wrap bandage off of the graft donor site and put a xeroform bandage on it as well as some Telfa pads. He told me to go ahead and change out that bandaging once a day. I'm assuming it needs to heal up a little more before we start treating it with the polysporin? I thought that was the gig last year with my other graft site. I was supposed to put polysporin on it constantly. So, I just want to make sure I'm doing right with all this wound care.

I asked him about the staples in my chest. He said he was going to leave those for a bit. I was surprised. The staples in my leg came out on day 7. Today is day 7 for the chest staples so I just assumed they would be coming out. Do you think that you will take them out at the Friday appointment? They're starting to itch.

Happy Monday!

Cathy

I finally received a response from him late in the day yesterday:

Just talked to dr van der Sloot and he caught me up on everything as well. 

It sounds like the voice prosthesis valve may have gotten pushed in, but not a huge deal to put another in at a later date once you've healed. 

There is apparently a small area in the mouth where the sutures pulled apart on the surface. However, dr. V is confident that the deeper tissues are healing well. In this circumstance, we just need to wait it out as the wound will heal from the inside out and that gap will fill in on its own. I don't think there are any more surgeries needed for that, though (thankfully!). 

Everyone has their own Voodoo when it  comes to managing a skin graft site. It will heal no matter what you do to it provided that the area stays clean. Polysporin is ok if it makes you feel better, but not absolutely necessary. 

I am not sure why your next appt with me isn't until the 4th, but I asked Jo Ann to get you in before then (either this Friday or next Thursday). We will take the rest of the staples out then. 

Hope this helps! 

Let me know if you need anything else. 

MM

No clue what he means by "rest of the staples". He makes it sound like some of them were removed and some weren't. Whatever.

I was so excited to be able remove and clean the OCL I have in right now. Little did I know.....

So, usually a stoma hole is made front and center of your body in your windpipe. My stoma hole is currently way off to the right. I don't know if this is because everything is still so swollen that it's just torquing in that direction or if they really made the hole that much off center. It's a question I will be asking on Friday (Kit! Take a note and remind me of this, please!). So pulling the OCL out was no problem. I happily scrubbed it all sparkly clean, then I tried putting it back in. Yeah right. I can't figure out how to get the damn thing lined up so that the baseplate is flush to my neck. And to make it worse, I can't remember if it was flush to my neck when I removed it or if Dr. V had this problem too do to the swelling! I have it put in the best that I can. I will be asking JoAnn for an insertion and removal lesson while I'm there on Friday.

I haven't used my mister the past two nights in a row. My lungs are definitely wet and swampy from all the saline I've been dumping in them the past week or so. Here I am thinking I'm dry and clogged which is why I can't breath when in reality it was just the incredibly tiny size of the damn tube they put in. So now I'm REALLY wet in my lungs and feel the need to let things dry out a little before I catch pneumonia!

When I'm just kicking around the house, I leave my neck uncovered. There's one small, mushy area of the skin graft that needs to dry up and heal. As soon as I have company scheduled though or if I'm going out in public, I immediately slap some xeroform and roll bandage on my neck so as not to frighten the villagers.

Since Dr. M told me to do what I wanted with the leg, I've been putting the ointment on. The xeroform alone ends up drying out and then sticks to the graft donor site. I then spend a good 20-30 minutes gently soaking it with water so that I can slowly peel it back off again. What a PITA! At least if I slather it in ointment first it stays moister longer and there's usually only one of two small dry spots to peel up instead of the entire thing.

My furnace has officially been turned on and ran for quite some time yesterday. I also hung the curtain between the kitchen and family room to block out some of the cold air from that uninsulated room. I think I've washed the curtain a few too many times because it's about 5" too short for the opening now. So, it was off to Amazon. (Do you remember what an internet shopaholic I became after last year's surgery?? History seems to be repeating itself!!) I found a thermal insulated blackout curtain and ordered it. Although my finger hovered over the order button for quite some time before clicking. Doesn't $130 seem a bit much for a bleeping curtain?? If it keeps the family room from dragging the rest of my house down into the arctic zone though, then it's money well spent. I really need to just bite the bullet and hire a contractor to put a real door in that doorway. I just hate that it's going to break up the flow of the house. <sigh> Decisions, decisions.

Speaking of kicking the furnace on, I was talking to Kit on Monday and she reminded me that she's on thyroid medication too. She has the exact opposite problem from me though. Her thyroid is overactive whereas mine is underactive. I asked her if the thyroid has anything to do with regulating body temperature and as it turns out, yes, yes it does. So at least I've nailed down a culprit other than menopause for my constant temp changes.

Here's some of what keeps babydoll and I entertained at night when we're not watching the Yankees, football, playing gin rummy, or what have you.

I put the final pieces in yesterday afternoon. It was so much fun that I then hopped on Amazon (yes, shopping AGAIN) and ordered three more. Meanwhile, when babydoll was in Myrtle Beach with his daughter a couple of weeks ago he wanted to buy me a Star Wars puzzle. He couldn't find one so he bought me, and mind you, these were his words, "the next best thing". Yeah, that loud noise you just heard was a sound of pain coming from Jamie when he read that. If you're a Star Wars nut, you'll understand. If not, well, sorry, it's an inside thing.

 I also did some web surfing looking for the yoga pants that I bought at Family Dollar. Didn't have any luck finding them so headed to Amazon (yep, lucky shopping trip #3) and bought a few different pair through there. There has to be some other brand/style in existence that will fit me! It's too hard trying to make do with just two pairs of these things. I'm doing laundry daily! Although maybe today I'll try wearing jeans to my doctor's appointment. I don't think I"m going to have to get undressed for them. I imagine they'll just be taking some blood and asking some questions in regards to my lazy thyroid. So, I can wear real clothes today. Yay!

And on that happy note, I'm going to crawl back into bed with my hot, hot man...............