Post-Op Day 2 - 1st Update

Well, a lot has happened since yesterday.  I'll try to make this as concise as possible.

Yesterday they pulled the central line in her neck.  We got her all cleaned up and changed her trach ties.  She still has an arterial line in her right wrist. She wants that gone.

We also got her in a chair.  Which is kinda funny, because she stays in the same position regardless.  So, I don't really see the point.  It takes an insane amount of work to get that accomplished because of all the lines.  But, she sat there for a while.  She kept on communicating that she wants to sit up - but of course, she can't.  We will have to work on getting her in a more upright position today.  I just don't think that can be accomplished in the hospital chairs.

While she was in the chair, we offered her some Pediasure in a small medicine cup.  And the most amazing thing happened.  She wanted it!  She drank it and asked for more.  And then she wanted to hold the cup herself.  I can't begin to explain how excited I was about this.  This is truly monumental.  I don't know that she's ever realized what hunger is or that it can be satisfied by eating orally.  If we could make that happen, I really think everything about feeding her would change forever.  Once she realizes the benefits of eating and drinking - well, Hallelujah!  Since we were hoping for this (since she hasn't had anything to eat or drink since Sunday) we put in her orders that she is an oral eater - so no tube feedings.  How exciting!!!!  I seriously was BURSTING with excitement and wanted to go running around shouting from the rooftops. All total, she probably drank about four ounces before falling asleep.

As if that wasn't exciting enough - Tom and I were leaving the room to go grab something quick to eat (she appeared to be sleeping) and I told her bye and that we would be right back.  She opened her eyes and and then waved bye.  Since she volunteered that communication, I signed and said "I love you" and you won't believe this... but she signed "I love you" back.  SHE SIGNED "I LOVE YOU" BACK.  And she blew us a kiss.  We were on CLOUD 9.  To put this HUGE event in perspective - it took a month for her to be nice to us after her last heart surgery in July.  A month!  And on Post-Op Day 1 - she signed I love you.  I couldn't be happier!!!

When we left her for the night all was well.  And we were happy.

At 10:30pm, we called to check on her and they had put her on CPAP (which helps you breathe).  They said her sats were getting into the mid-70s (she's in the 80's, baseline).  The problem is that she is in pain.  Coughing hurts her.  So, to avoid coughing, she is taking shallow breaths.  This doesn't inflate your lungs fully.  So, all those little oxygen producing parts get full of gunk.  Being on CPAP will help inflate her lungs.  Walking and sitting up helps, too, but those aren't options right now.

So, that was a real downer.  In typical special needs fashion - you crash from high to low pretty hard.  That part sucks.  Emotionally, that's exhausting.

So, they just rounded on her and after spending all night on CPAP they are going to let her try going back to just the trach collar.  Hopefully the night on it helped enough to get her over the hump.  But, if memory serves, this happened several times in July after her heart surgery.  Being on CPAP overnight just bought her another 24 hours in the CICU.  They want her off CPAP for at least 24 hours before going to the floor.  As of right now her sats are good, so our fingers are crossed.

This morning she was SO miserable.  The worst I've seen her thus far.  And it is so hard to watch her like that.  I can't help her and it kills me!  She is itchy (from the Morphine) and she was super agitated with the CPAP (she doesn't like the help with breathing) and she is way over the arterial line in her right wrist.  They gave her Benadryl and Valium and she calmed down a bit.  And they are taking her off Morphine and are going to put her on something else - Oxycodone or something.

I also think she is even more swollen today than yesterday.  The area around that cut out in the cast is pressing up against the cast.  It looks painful and she keeps trying to get her fingers in there.  Hopefully her ortho surgeon will come soon and let us know if that's normal or safe or something.  It looks horrible to me.  They are trying to get that fluid off her, but it isn't easy.  They are giving her another diuretic (either in addition to, or as a replacement for Lasix) but I can't remember what it's called.

They also put some compression things on her right leg (since it doesn't have a line in it).  I'm sure it's just another thing that's annoying her.

As usual, it has taken more FOREVER to write this.  It is now almost 11am and she is even MORE swollen than just one hour ago.  I am getting really worried.  Her middle is bulging through the opening in her cast.  Her face is way worse.  My heart just aches for her!!!

Tuesday afternoon.  So cute.  In a miserable sort of way.

Getting her all cleaned up on Tuesday.
I think it's funny how you feel compelled to smile in all photos.
Even when torturing your child.  Say Cheese!!!

Drinking Pediasure!  Go Harlie Girl!!!
You make us so proud!

Getting her in the chair.  Looks easy enough.

You might be able to see her right eye and how it looks a little bruised.
The swelling is worse as I type this.

This was first thing this morning (post-op day 2).
She was grabbing and swatting at everything.  

We still haven't seen her ortho surgeon.  I am really hoping she comes by soon.  Please keep your fingers crossed that she can get rid of that excess fluid soon.  She just coughed while on the trach collar and she didn't make a sound.  Complete silence.  Which tells us that even her airway is swollen completely around the trach.  That terrifies me.  

Thanks,

Christy