Tuesday, May 3, 2011

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!!!


Just Diane said...

Poor sweet girl! I hope that clears up super quick. Aw. Big hugs and lots of prayers.

B-Mama said...

OMG! Poor Harlie! I am glad she seems to be handling it as usual--like an awesome champ. She's probably feeling happier without the pain associated with the infection! Prayers continue here, for all of you. It was great news to read you're in a good room and happy with the set-up this time around. If you've got to be there, why not make it comfy?!

Murph and Cooper seem to be in great spirits. M was over here with Cole after school yesterday and the boys had a wonderful time together. Everyone played great and had fun. We saw Coop and Maggie afterward and the boys were running around and playing on the swingset. You can rest assured that your boys are fantastically flexible and seem to be rolling with the punches well.

Take care of yourself and we'll help take care of things on this end. xoxo God bless!

Anonymous said...

Just checking in on you all. WOW those pictures!! Poor little Harlie. She is such a strong girl. And you are such a strong Mama !!

Anonymous said...

I'm so sorry you have to learn all of this, but wound vacs can be wonderful pieces of medical equipment. They not only pull the infection out, but also increase the blood flow to the area which helps with healing. Hopefully by the time Harlie goes back to surgery it has done the job and she can come home without it. If she does have to come home with it, ask for extras of the clear dressings. Luckily (if you can see it that way) her wound is not on a place that has lots of creases like a stomach, but if the dressing gets a tiny air leak, they beep. The easiest way to fix that is to cover it with another clear dressing. Hoping you won't have to deal with all of this.

Keeping you all in my thoughts and prayers!
Bonnie Horensky George

Ann said...

Christy, those pictures just break my heart. Harlie has been through soooo much and you just want to scream "WHY?" I hope today was a manageable day for Harlie and you. Wish I could offer more than my cyber-support, but it sounds like you have lots of IRL support to help you and Harlie get through this. Know you guys are in my thoughts.


Susan said...

This is just heartbreaking that Harlie is having to go through this. I am so glad you have such a good friend there with you. A little laughter makes it all a little easier to bear. I'm so sorry Christy. I thought you guys were out of the woods on this one. I'm still really shocked.