Day 5

Hi,

So, I suppose this is going to be a bit of a roller coaster.  Yesterday was way better than today.  Today has not been a good day.  And when Harlie doesn't talk - it is a really bad day.  And she's not talking.  Insert super sad face here.  I asked her why she didn't want to talk - I said is it your lungs, throat or face?  She pointed to her face.  I think she hurts too bad to talk. 

She didn't tolerate her wound care or turning of the screws well at all.  It was rough.  I turned the screws and her nurse did the wound care.  I just couldn't.  And I don't need the additional practice.  Today, I needed the break. 

Whew, honestly, I am having a really bad day.  I am feeling so mad. 

One of her cardiac scripts is requiring some extra effort to refill and I am having a hard time getting that done.  I've made calls and sent emails. I don't have the energy to explain why it is difficult - but please know that it shouldn't be.  Especially right now.  For crying out loud, I just want her stupid meds so that she has them.  I think there are too many docs in the kitchen.  Is that not how the saying goes?  Oh, well.  Things aren't normal in my world anyway.

And on occasion, I see snippets of the mass hysteria that is the Corona Virus.  And a shortage of toilet paper?  WTF is going on out there? I go away for one week and this happens?  And I have NO idea how much toilet paper is in my house!  Why the fuck is this a concern in my life right now?!?!

First of all, welcome to my world, people.  We live in fear of EVERY virus - because it doesn't matter what it is - it can put Harlie in the hospital - or worse.  That is our reality.  And that has been our reality for over 13 years.  You don't see me hoarding hand sanitizer and toilet paper and crying every day.  Nope, I just go about my life, washing my hands and trying to laugh despite the immense amount of CRAP cards that we've been dealt. 

Second of all, why toilet paper?!  This isn't a GI bug, people. 

So, I asked plastics if we have to keep cleaning her pin sites twice a day.  This is agony for her.  Maybe due to pain, maybe anxiety, maybe both.  Regardless, it is agony for both of us.  The answer was a solid yes.  I exclaimed DAMN IT! Then, I asked for how long.  Based on my reaction to her first answer, it was clear she didn't want to answer my second question. 

Sigh, we will do what we have to do.  And we will hate it.  But, we will do it. 

I'm not sure where plastics gets the feedback that kids tolerate jaw distraction without much pain.  That is clearly not my experience.  Of course, we have a kid who has had well over 60 surgeries, so maybe she is just clean out of tolerance for anything.  Me too, by the way.  I'm over this.  I'm over how hard life is.  I'm over hearing healthy people complain about temporary discomforts. 

The next time life feels difficult, try asking yourself this question... Is this a life changing event or is it a temporary discomfort?

Then react accordingly.  It has gotten me through some hard times. 

So, something positive...

Harlie got to pick out something from the Treasure Chest yesterday.  She picked this building thing.  Apparently the instructions weren't as clear as Harlie needed.  She struggled for a little while. 

Then she got her tablet and typed the name of the toy into You Tube.  She found a video and then built this cute car.  I love it when she shows me how smart she is. 

Tom just got here.  Thank God.  He makes everything better. 

Another positive thing... Harlie was trying to tell Tom something she wanted to do with the car she built.  She was struggling (since she's not talking).  So, she went to her tablet and pulled up the sand app (I haven't seen her open that app in ages - it is for drawing in the sand) and then drew what she wanted to do. 

It is a ramp, showing that she wanted to make the car jump from her bedside table to my table.

Damn, I love that little problem solver. 

She got to open a few more people today.  There are three left to open.  We'll save those for after tomorrow's pin turning and cleaning.  They look so cute on her wall. 

Oh, the CT scan was good, so we are planning on taking her home tomorrow.  While I'm certainly glad to leave the hospital, I can't help but feel a bit nervous taking her so far away from her doctors.  Hopefully, we won't have any issues. 

Okay, that's it for today.  I need to go turn her screws and then Tom and I are going to dinner. 

Thanks for everything!

Much love,
Christy xo