Jaw Distraction Post-Op Day 4

Wow! Today was a much better day. 

Harlie's pain is more controlled.  And they told me that they will send us home with some Oxy, so that's not an issue. 

Last night she had some beats (8 or 9 I think is what they said) of ventricular tachycardia. I don't think I remember that ever being an issue.  So, they interrogated her pacemaker and said they are going to send an email to her doc in DC to let them know.  And I need to follow up with that when we go home.  Hopefully there won't be anymore issues with that, because I just googled it.  No thanks! We are full of issues right now - not accepting anymore at this time. 

I turned the screws this morning and that went okay.  She isn't exactly cooperative, but it was doable with someone to help hold her arms/hands down.  And I cleaned all of her wounds.  They are still oozing a little, but looking okay for the most part. 

Her plastic surgeon came to see her today.  He turned the other two screws for me. I was a bit nervous since they haven't been turned at all.  I was a little worried they would be harder to turn and that I would hurt her really bad.  He said they turned fine.  But, I don't have to turn them again until he tells me to.  He wants to see a CT scan before she goes, just to make sure everything looks good.

So, we are really close to being able to go home!  Woohoo!  I do think she will be so much happier at home.  Although, her nurses are doing a really good job spoiling her here. 

She got her CT scan at around 5:30 or 6pm tonight. 

Then she came back to the room and wanted to draw. 

And she has smiled a few times today. 

She is really not happy about the constant drooling.  She cannot close her mouth (and her lips don't touch).  But, if they get the growth they want, that will be much easier when all this is done. 

Her home bound teacher, Ms. Wead, made Harlie a bunch of "people" for Harlie.  Each one is individually wrapped and she gets to open a few after she has to do stuff she doesn't like.  They are so cute!  She loves opening them to see who is in there. 

She hasn't said anything negative today.  She is definitely getting back to her good-natured, easygoing, fun-loving self. 

Ugh, I just turned the screws again and she is not happy anymore.  I hate doing that to her.  Her nurse is going to give her some meds, clean her wounds and then let her go to sleep for the night. 

Tom is going to fly back up tomorrow and we are going to get everything ready to take her home on Thursday.  Her surgeon still has to look at the CT scan and give his okay for us to go.  But, I assume that will happen tomorrow just fine.  Hopefully all looks good on that scan! 

My mood is so much better now that Harlie is more herself.  I was really feeling defeated there for a few days.  It is very hard to watch her go through so much.  And each surgery/hospitalization just builds on the last.  We go in heavier - and with more memories - each time.  So, thank you for all the kind words of love and support.  I promise you - they help me get through. 

Much love,
Christy xo