Monday, July 22, 2013

Home update

I'm so sorry it's been so long since my last post.  I can't believe she was discharged a week ago today (Monday).  The adjustment hasn't been easy.  I've been quite spacey.  And tonight, I spent several hours writing about our trip home and I just don't think it's post worthy.  It feels like I'm just rambling and complaining and I am not a fan of those kinds of posts.

So, I'm skipping ahead a bit.  I'm super glad to be home.  And I'm sure Harlie is, too.  I'm betting that she slept so hard in the hotel and at home since those were the first nights she wasn't woken up by a nurse messing with her.

The turning is going okay.  It's certainly no easier.  We give her pain meds before and she fights just as hard as she did the first day.  But when we are done for the day, we let her cross off that day on a calendar so she can see we are closer to being done.  I can't believe that we only have TWO days left now!  As long as the surgeon doesn't add another day, of course.  We have to send her a picture of Harlie when we are done to see if she's okay with how she looks.

It seems like the actual turning hurts - she cries a bit.  But once we are done, she stops crying and doesn't complain about any pain.  So, that's good.

She's had speech therapy once and that went well.  I called Amy after I tried to get Harlie to blow bubbles (something that will really help her lungs) and she couldn't do it.  She cannot get her lips closed and she probably doesn't have the lung capacity, either.  Here is Amy getting her to try to close her lips...

Her skin is so tight since it's being stretched.

And she's still on oxygen.

I know that the goal of this surgery was to bring her jaw forward.  And it looks like it's working.  She's making noises that I've never heard before (when she coughs) so I can't help but think that it's because she has more of an airway than before.  She's definitely louder.  So, that's good.  It's probably a really good sign that things are going the way we want them to.

But, it's still very difficult to see her look so different.  I loved her face the way it was before.  And I loved it the way it was before each of her other three jaw surgeries.  I need to think of a way to describe how it feels to see your child's face change so much.  And not in the normal way it's supposed to change.  All I can tell you now is that it's more difficult than you'd think.  It doesn't help that she can't close her mouth.  I can't imagine how uncomfortable that would be.  And of course she won't be able to swallow with her mouth open.  Poor thing.

I was in Target the other day and I heard a woman yell across the store to another woman asking her if she heard about so-and-so and that she broke her ankle.  "Oh, I know!  Isn't that just horrible?!"  "Yes, so crazy!"

Yep.  Horrible.  Crazy.  That's exactly how I would describe a broken ankle.  I hate that I have those thoughts.  I don't know who this person is with the broken ankle.  Maybe she was on the brink of trying out for the Olympics or something.  I'm sure it is horrible and crazy to her.  But, after all I've seen Harlie go through, that would definitely NOT be my definition of horrible.  Or crazy.  It's those moments that make me think I'm not ready for normal civilization yet.

Tonight was the first time we took her out of the house since we got home a week ago tomorrow (Tuesday). Before we left for this surgery, she was always up for going on a walk with the dog (in her chair).  But tonight when we asked her, she started to cry and said no.  We told her she could go in her chair, but she still said no.  So, Tom picked her up and carried her to her chair.  She seemed to have a good time once we were on our way.  She's so funny.  Tom pushed her chair with one hand so he could walk almost beside her instead of walking behind her.  That totally bothered her.  She really wanted him to put both hands on the chair and she made her feelings perfectly clear.  Over and over again.

She has thrush on her tongue from all the antibiotics.  So, we started her on another med for that.  I think Murphy got it when he was an infant, but other than that I have no experience with it.  It was really bugging her the other day, so I wiped her tongue with a towel and it bled.  Ew.  Poor thing.  She's just got all kinds of things going on.  Way too many antibiotics in such a short time.

The other day she went and got her cup from the cabinet and filled it with water.  She went to drink out of the straw and realized she couldn't do it.  She started to cry a very sad cry and handed me the cup.  Oh, it is so hard to make her go through so much.  And I have no idea if she knows why we're putting her through all of this anyway.  I certainly don't want to tell her that we want to get that trach out.  The last thing I want to do is to make her think about it.

Well, that's all I have for now.  For some reason, I'm just not feeling like writing tonight.  See?  I'm having a hard time getting back to myself.

Thank you for all your wonderful, continued support.  I couldn't have survived this month without it!

Much love,
Christy xo


vtkthies said...

Ugh. Just... Ugh. Lots of love to Harlie, you and the family. You're in my thoughts!!

PK's mom said...

Thanks for the update, I have been thinking about you guys.

Susan said...

It's good to get an update. Perhaps you'll start to feel more like yourself after the distraction is done. I know Harlie will readjust. She will figure out how to drink from a straw again and she will be better off for having had this surgery. Even if the trach doesn't come out, having her jaw in alignment will help with speech and eating. And make it easier for her to breathe. So even if you leave out the hope of getting the trach out that's enough stuff for her to understand why.

I know what you mean about appearance. We do what we do for our kids because it's in their best interest, but we love them just as they are. It's disconcerting to have someone you love's appearance change. And the emotions are especially complex for us because of the situation. You'll be in my thoughts. XOXO.

Betsy said...

I really cannot even imagine what you guys are going through. Know that you and sweet Harlie are in my prayers.

Anonymous said...

I check in on your blog and am keeping you in my prayers. You have incredible strength and love your sweet girl so much!