Post-Op Day 4

Hi All,

Harlie's swelling looks like it is marginally better today (compared to yesterday).  I'll add a pic in a bit.  I've learned that the first pic I add to my blog is the one that gets highlighted when I share the blog post on Facebook.  So, I'm sorry for all of those with weaker stomachs who hate me now.  They should just be thankful their kid isn't going through this.  Because we cannot wince or show any issue with looking at her.  Poker face.  All day, people. 

It is hard to believe how swollen she is, despite all the meds they are giving her to help with that.  God knows what she would look like if they didn't give them to her! 

She has attempted to look at her tablet several times over the past couple of days, but I guess she realized she couldn't see it/hear it.  So, she shut it.  Today, however, she was able to watch a show or two.  So, that's a little progress.  

Plastics always comes super early and her nurse told us that when they came to look at her incisions and drain site, Harlie signed "stop" and swatted them away.  You don't have to know sign to understand what she's saying.  Her gusto and attitude gets her point across.  

If the nurse shows Harlie the blood pressure cuff, Harlie willingly lifts her arm.  But, if you're coming for her IV or near her face, she is not as cooperative.  Tom and I have been watching Shameless and one of the characters wears a sleep mask that I think Harlie should have.  

I think it would be hilarious, but I wouldn't want to offend anyone.  So far, most of her doctors and nurses have had really good senses of humor.  So, I'm thinking it would've been okay this stay. Oh well, next time.  Haha!

So, this morning we called home to check on the boys.  I was on the phone with Maggie (my niece) and she went and sat on the slack line in our backyard.  While we were talking, she exclaimed, Whoa!  So, I asked her what was wrong.  She told me she fell off the slack line - so I said, "Tom, pull up the camera."  Haha!

Ahhh, I'm so sorry, Maggie, but this is too funny not to share!  I have to say that you didn't miss a beat, I would never have known you fell if you didn't tell me.  Your voice didn't change at all!  I have laughed so hard watching this video!  I cried tears of laughter!  You totally made our day better!  And you're such a great sport!  Love that about you! Thank you, Maggie! 

So, here's how Harlie is looking today, on Day 4.  

She stares at me.  I've asked her several times if she is mad at me and she shakes her head, "no." I then sign and tell her I love her and that I'm sorry and she signs that she loves me.  But, damn, that stare!  I'm not sure I believe that she isn't mad.  And, really, I couldn't blame her! Our poor, sweet girl!  Oh, our hearts are aching!

I have uploaded so many pictures, just to delete them.  I want to share them, because it makes me feel like we are less alone if everyone else has to see what we have to see.  But, then I realize that probably isn't fair to you. The bruising goes from the top of her chest (collar bone area) to behind her ears and into her hairline.  We keep telling her it will all go away.  She doesn't appear to be comforted. 

Harlie watching the backyard camera with Maggie, Cooper and the dogs
talking through the phone.

The team rounded this morning.  The attending cardiologist is her cardiologist here and we just saw him pre-operatively on Monday.  He's one of the few people who knows what she really looks like.  I told Tom yesterday that I wish we thought to print out a picture of Harlie to put on her door.  

Anyway, she is now on all meds through her g-tube.  So, assuming all goes well today through tonight, we are planning to take her home tomorrow.  Tom found a car to rent, so he will go to the airport to get that taken care of tomorrow morning and then head back to the hotel, load up the car, check out, then come to the hospital to pick us up.  When we told Harlie we were going to go home tomorrow she pointed to her face.  So, Tom told her we are going to drive instead of flying home.  

Her nurse told me that when she took her to the bathroom, Harlie wouldn't go to the sink to wash her hands because she didn't want to see herself in the mirror.  I knew that, but it is kinda crazy that Harlie is able to get that feeling across to other people, too. 

Normally, I feel pretty good about taking her home, but this time, it feels weird.  She is telling us she isn't ready to go home.  We think she doesn't want anyone to see her.  We've asked her if she wants to go for a walk on the floor, or out to the garden, but she says no.  I know each day will get better, but it is still hard to constantly make her do stuff she doesn't want to do. I am fine taking her home.  I am just worried that all the moving around is going to hurt her.  The bumps in and out of doors in her wheelchair, for example.  I wouldn't even consider walking her down the street with all the uneven pavement!  Doesn't that just sound painful when you're head is aching?!  And oh, the looks we are going to get!  

We were able to convince Harlie to let us give her a shower today.  It was tricky because they don't want us to get water on her IVs (one in each arm) or in her ear.  I think I did a pretty good job, considering.  After her shower we did her wound care, I changed her trach ties, put her hair up in two little buns and I think she felt so much better.  She wanted to sit in the chair instead of getting back into bed. That's great!   

She asked for Legos, so Tom went to a local toy store and got her some.  She wanted to do it, but she got so tired and had to stop.  Man, it is hard thing to see a kid not have the energy to play. 

Side story, usually I don't remember my dreams. And I can't believe I'm going to share this with you, but I think it is so funny.  I am in a Fantasy Football league with some family and friends. And we have done it for the last five years or so. Last night in my dream, it was like 3 weeks into football season.  I made a comment to a family member that is in the league that I was sad we didn't start our league this year, and I was missing it.  They looked at me like, oh crap.  And I realized that they started the league without me!  I asked a friend if she was in it and she said, "Of course!"  So, I started to cry and walked away.  Hahaha!  I woke up and thought, what month is it?  Oh, April!  Whew!  Just a dream.  Haha!  I have giggled every time I thought about it. Silly.

Well, I'm going to wrap this one up now.  There have been lots of interruptions, so my thoughts are all over the place here.  Thank you for all the love!

Much love,

Christy xo