Full Day Deux

Things got straightened out last night.  Turns out my day nurse didn't see the orders Dr. Hornick put in my chart.  Thankfully, my night nurse found them after I was confuzzled by some things and asked her about them.  So at about 11:00pm last night all the new orders were actually put into the computer system and everything is as it should be.  Gotta love technology.

I am now on 3 antibiotics.  I did get put on the good one, so YEAH!!  It's called Aztreonam...I've been practicing saying it all day and it hasn't gotten any better.  This one isn't sticking in my head for some reason.  Oh well.  The other one is Cipro, which I'm on quite a bit too.  Usually, it's in pill form, but doc decided to do IV this time.  So, my current med schedule is: 8am: Aztreonam, 10am: Tob and Cipro, 4pm: Aztreonam, 10pm: Tob and Cipro, and 12am: Aztreonam.

We did levels today for Tob.  I am pretty sure this is the first time getting blood 3 times only took 3 sticks.  I don't know how that happened.  Although, my nurses did listen to me when I told them where to stick it (LOL! the needle that is...).  The 2 nurses who did them were really good, so I give them the credit. 

I really only have 3 veins that can actually be poked successfully with some consistency.  2 in my left hand and one on the back of my right arm.  That one is particularly awkward, but it works so, we do what we have to.  One of the veins on my left hand gets pretty sore after getting stuck.  It's right over the bone of my thumb below the knuckle...but again, it works, so we do what we have to do.  Those results I probably won't get unless they're high...kind of a no news is good news thing.  I also realized I made a mistake in my last blog.  The troughs I get twice a week after today.  Always on Mondays and Thursdays, unless Dr. Hornick gets a hunch.  And, he's always right when he gets his hunches :)  So, my veins get a break until Thursday.

As far as how I'm feeling...

Last night and this morning were particularly rough.  I tried going to sleep at about 11:30 and coughed until 2am.  When I woke up this morning it happened all over again.  From 8am until around 10:30 all I did was cough.  Coughing always has some pain with it.  You can't cough that much and not have pain.  I start getting headaches from the pressure and my abs start to burn.  More than anything, though, it just breaks me emotionally.  This feeling of "it's never going to end" start flooding my mind and I can't help but cry.  I know I'm an emotional person to begin with, but I hate this kind of crying.  It's tears of desperation.  I'm pleading with God to make it stop after about an hour.  Eventually, I remember (it has to be the praying that makes my brain work again) that cold water or ice works.  I start sucking on ice and sipping the water and things start to calm down.  Then I fall over from exhaustion and usually just go to sleep, if my body will let me.  I long for those periods to not come.  I do everything I can to avoid them.  Sometimes, that's just not possible.

I'm extremely congested both in my sinuses and my lungs.  A few people have commented that I sound particularly bad this time.  I'm coughing up a ton of mucus and have already gone through 2 boxes of tissues since I've been here.  By day 2 I'm usually feeling better and coughing less, so I'm having a rough time, mentally.  Sometimes it's too much to handle.  I just want to feel better, even a little bit.

Dr. Hornick wrote, on the white board in the room, what my goals are for this time.  Number 1 is decrease in cough/sinus congestion.  Number 2 is decrease in dyspnea.  This was a new word for me, so I had to look it up.  It just means difficult or labored respiration.  The white boards are a new thing, so actually seeing the goals are too.  I like it :)  Number 3 is "BS Control".  I laughed when he wrote that down.  I thought he was talking about something else, but he quickly told me that he meant blood sugar control.  The other way would work too, though. :)  Apparently, at least one of my meds is made with some sugar solution, so he changed that in my chart so they would make it with saline instead.  I had a spike in my blood sugars this morning which really confused me, so finding that out relieved that concern.  The rest of the day has been better as far as those go.  I forgot to ask about my A1c result, so I'm going to try to remember that for tomorrow.  The A1c is the test they use to find out what your average blood sugar has been for the last 3 months.  They like it below 7.0 and as close to 6.0 as possible.  Mine usually runs around 8.0.  It's gotten a lot better over the years as I've learned to take better care of my diabetes.  My goal for this one is at least 7.8.  My last one was 7.9 so I want to see improvement!

Moving on, number 4 is "smile daily".  I kinda liked that one.  I don't really think I have a problem with that, and he knows it.  I think that's why he put it up there.  There was also originally a number 5, which I find hilarious.  It was "Be Normal".  As in, Normal, IL.  He doesn't miss any opportunity to throw that around.  A couple of years ago, he realized what town I was from and hasn't stopped joking about it since.  I love that he has that dry sense of humor.  It reminds me of my dad, so it's kinda comforting :)  He quickly erased it after he wrote it.  I laughed, but maybe he didn't think others would get the joke.  Besides the fact that no matter what, I will never be "normal", so that is an impossible goal :-D

My voice hasn't really gotten any better.  All the coughing last night and this morning made it worse so there is almost no voice left.  That makes ordering my food fun :)

So now the good news.  I found out that the adult CFers will be moving to a new floor at the beginning of next year.  Dr. Hornick has been lobbying for a long time for us to get our own area.  Being around sick, contagious people is NOT good for us at all.  This will be at least the 3rd time we've been moved since they stopped putting us in peds.  I have high hopes for this.  They've been renovating the floor for awhile, so it will be brand spankin' new when we get there.  I know that Dr. Hornick wants us to have a lot, but I'm not sure what will actually happen.  The new area will be next to the IPCU (Intermediate Pulmonary Care Unit) which has really big rooms...so I'm crossing my fingers for that.  Also, he's wanted us to have (and we've all wanted) what all the peds kids have.  Flat screen TVs, cordless phones, video games, DVD players, refrigerators...the works basically.  When you're in as much and as long as we are, these things are really awesome.  It makes being here not quite as horrible.  I'm not sure what the board will be willing to pay for and what will be donated.  When my friend, Lori, died last year her husband donated 7 dorm refrigerators and a Wii for use ONLY by CFers in her memory.  We have to eat so much to keep our weight on and everybody I know brings food with them, so those fridges are great.  I always have soda in mine.  Mmmmm...Mountain Dew. :)  These kind of luxuries are really special and I'm hoping that someone will see fit to get them for us.  Children's Miracle Network outfitted peds, so they may do it for us too.  We're a special breed of adult, so we may still qualify as children :-P

Alright, so I've written a whole heck of a lot, so I'm gonna quit now.  It's kinda nice getting this stuff out...should have started this a long time ago.  (No "told you so"'s from anybody, got it? ;-) )