Back in the OR

Around 8pm last night the wound vac stopped working.  This was very unfortunate.

Beep, Beep, Beep.  10 second pause.  Beep, Beep, Beep.  10 second pause.  Beep, Beep, Beep.  10 second pause.  Beep, Beep, Beep.  10 second pause.  Beep, Beep, Beep.  10 second pause.  Beep, Beep, Beep.  10 second pause, etc.

For the next 14 hours.

The night nurse couldn't fix it.  So, he called ortho.  They came around midnight and fiddled with it for a little while.  But, it was clogged.

I woke up around 2am and found Harlie still watching TV.  She was watching How to Train Your Dragon for the fourth time that day.  I tried to take out her hearing aid but she wanted nothing of it.  She did sleep a lot that day, so I guess she wasn't tired.  I tried to go back to sleep, but I wanted to take out her hearing aid and turn off the TV when the movie was over, and that incessant beeping was maddening.

About an hour later the movie was over, so I took out her hearing aid and turned off the TV.  She cried but then was asleep two minutes later.  I, however, could not go back to sleep.  That damn beeping.  They tried to silence it and cover it to at least make it a softer sound.  I heard them saying that it had no vacuum.

I tried to sleep despite the beeping.  But, I couldn't.  And it was a sealed system, so I thought what could be the harm in just turning it off?  So that's what I did.  And then I went back and tried to go to sleep.  But, then I started to worry that I had not made a good decision.  So, I got up and found our nurse and told him I turned it off.  He looked mad.  He went and called the doc to let her know and he told me that she was "upset" that I had done that and that she wanted it back on.  Grrrr!

Eh, sleep is overrated anyway.

Since the wound vac wasn't working, they had to change the dressing.  So, that meant she had to go back in the OR.  She was originally scheduled to go back in on Thursday.  They just moved it up to today.  They stopped feeding her at 4am and she went back in to the OR around 10am.  They irrigated and debrided the wound again, replaced the dressing, put the wound vac back on and measured her for her back brace.  After the procedure they put the cast back on her.  The plan is to put her in the brace after Monday (it takes a couple of days for it to be made).

Her surgeon said that the wound looked good and that there was no more pus or necrotic tissue.  And she said that she thinks she'll be able to close it up (with stitches) on Monday.  So, as of right now, she's scheduled to go back in the OR on Monday.

Only the cool kids get to go into the OR three times in seven days.  I'm beginning to think Harlie is an overachiever.

My mom and sister came up today to hang out with us.  That was really nice.  And it made the day go by faster.  So, thanks Mom and Sandy!

There's more I could write (no surprise) but I am falling asleep as I type this.  So, goodnight all!

Thanks for reading!
~Christy

9 pm Update

Jennifer came up to visit today.  She went by my house and picked up a bunch of stuff that Tom packed for me.  You know I have to move in.  So now I have my computer.  YAY!  Now I can write MORE!  And upload pictures!  No groans please!  

So, nothing new really to report on.  Just that Harlie has not gotten any pain meds since last night - which completely floors me.  The meds are available to her - she just hasn't indicated in any way that she's in pain.  She's taken a few good naps and she's watched a couple of movies.  

Nothing has really changed since my last post.  Except that ID came by and said that they believe the infection was caught before it went into her bone or hardware.  So, that means a shorter antibiotic course.  YAY!  As long as she's here she will receive IV antibiotics.  And depending on what the culture grows, they might be able to switch her over to an oral antibiotic, which means she wouldn't come home with a PICC line.  

However, it has come to my attention that you can, in fact, go home with a wound vac.  

Oh, Lord.  

I'd rather have the PICC line.  I'm crossing my fingers that it doesn't come to that.  But we won't know anything for a few days.  It all depends on how Thursday's procedure goes.  

So, without further ado, here are the pictures.  They are not in order because I think the first picture is what you see on Facebook, and the first picture is the gnarly one.  And I didn't want it to do that.  Please know that there is a gross picture coming.  

Here she is getting the last few look overs by some of the OR team.  When we got to this room, she cried.  So sad that she knows that room so well.

This was in the casting room earlier in the night.  It was taken right after they found the infection.  Since they had to completely split the cast in the back, they had to wrap new casting material around her waist to keep the cast secure until they got her in the OR.

Watching a movie on the iPad, trying to escape reality.

This was just a few minutes before they took her to the OR.  Another case of not actually being happy, but trying to look it anyway.  Even Harlie's trying to muster up a grin.

And here is the wound.  Holy Infection, Dr. Blakemore!

I was holding Harlie across my lap (tummy down) and Heather was sitting next me helping support Harlie's head.  When they pulled back the cast and we all saw her incision I leaned my head into Heather's shoulder and Heather said, "I don't know who to comfort!  You or Harlie!"  I said, "Me, of course!  I'm your friend!"  Then she said, "Okay I have to go to the liquor store.  I'll be right back."  You know, you just gotta love funny people.  Who know you so well.

I feel terrible laughing when Harlie's in so much pain.  Not because she's in pain you understand.  I have to find the humor in a situation.  It's just the way I handle stress and pain.  But I think by this point, we had taken out her hearing aid since the cast saw is so loud.  So maybe that muffled the sound of her mother's laughter when she was writhing in pain.  Oh, my sweet, sweet girl.

This is her wound with the wound vac in it.  I think it's a sponge that is in the open incision that has a light suction to do... something to make it heal better and faster.  Or something like that.  It's really not something I want to know much about.  But I'm pretty sure that now that I've said that we'll be going home with one and I'll have to anyway.

Here's the new cast.  It has a hole in the front for her g-tube and a hole in the back for the wound vac.  It does not go around her leg.  So she can bend at the waist.  As of right now it is very close to her trach and it is making access quite difficult with the trach collar.  If they wanted to send her home in this cast I would not agree.  But, they are changing it on Thursday, so we'll get by for now.

Here she is napping late this afternoon.  In fact, she was sleeping so hard that her nurse was able to change her IV dressing without waking her up!  Jennifer told her that she just got herself a new job - home healthcare for Harlie!

Earlier today she asked for water.  So, she drank a little bit.  She also drank a little over an ounce of Pediasure.  But, I've been told that good nutrition is so important for a wound like this to heal - so I am not pushing her to stay strictly on oral feeds.  So, we are going to tube her two cans over night tonight.  I will try to give her some Pediasure by mouth tomorrow - but I'm sure we are going to have to tube her most of her nutrition while in the hospital.  And that's okay because I know she will bounce back to her norm when we get her home.

It has taken me a long time to write this post (so many interruptions!) so it is now 9:30 pm and when we changed her diaper tonight, she clearly indicated that she was in pain.  So, I asked the nurse to give her some pain meds.  They are trying Nubain instead of Morphine.  Morphine makes her so itchy.

Tomorrow my mom and sister are coming to visit.  So far, this stay is going great!  I love having visitors!  And we got lucky this stay.  The CICU is full, so we are in an overflow room, which is an HKU (heart and kidney unit) room (the floor) but it is being used as a CICU.  So, we get a bigger, more comfy room with a couch, private bath and shower, and you can eat in here!  And we still get CICU nursing!  Isn't that great?  It's the best of both worlds!

So, that's it for now.  I will write more tomorrow.  Thank you for all your support!!!
~Christy