Tuesday, July 27, 2010

Recovery Update

Harlie is doing well, all things considered.  Each day she shows another small improvement.  

I saw her smile yesterday with her nurse, Brandy.  She's clearly still mad at Tom and I, because she doesn't want to smile with us.  But, last night after she was in bed, I went upstairs to check on her and we played a little bit like we used to and she gave me a smile.  She still won't sign that she loves me.  So, while we were playing I took her hands and "made" her sign it to me and she actually laughed.  I made a big deal of saying, "oh thank you, Harlie"!  And she seemed to get the humor of it.   

Here is a picture of Harlie showing Tom her new beads.  Children's National Medical Center in DC has a Beads of Courage program for their cardiac kids.  She earns a bead for certain things (like getting a chest tube put in, heart surgery, ivs, etc.).  I'll have to show you more about it later.  Here's the post when I first wrote about it, but the links don't work anymore.  She earned at least 30+ beads this trip.  And some of them are glass beads and they are beautiful!

Here's her in the stroller getting ready to leave the hospital.  Her happiness was more subtle than I expected.  No smiles.  But her eyes lit up and we could tell she was happy. 

She seems to be able to stay off oxygen during the day.  She was on it for the first couple of days, but it looks like she's okay now.  We are just spot checking her throughout the day.  If she stays on the monitor (which is wrapped around her toe) she doesn't want to get up and walk around.  So that's why we're spot checking her.  

She still hasn't walked around too much.  Just from the couch to the DVD player to put in another movie.  She's even taken some naps on the couch.  And this girl hasn't napped in years!  

There have been a couple of times she has made me hurt.  She doesn't want to take a bath.  She just shakes her head "no" and when I insist she hangs her head and cries in silence.  Then she holds her shirt down so I can't take it off.  Ugh.  She kills me.  And she loves her baths!  Well, she used to anyway.  I'm sure that will change in time, I guess for now she feels vulnerable without her shirt on?  

She scratched her incision the other day while she was about to get in the bath.  She looked down at her incision and just started to cry.  I can't imagine looking down and seeing that kind of boo-boo.  It must look so scary to her.  And it must still hurt.  

She still doesn't want to cough.  So her secretions are still a problem.  They are very thick and it is difficult to get them out.  Not to mention that she pushes us away most of the time.  And that is something that she's never done before.  She's always been very cooperative with suctioning.  

A small step showing us that she's getting back to herself was when she pulled away the trach collar for us so we could suction her.  I do think that even though she's fighting us sometimes, she does still remember that she needs it.  

I have more to tell you, but have run out of time.  I took a couple of days off from my computer, but hopefully will be able to get back into the swing of things and blogging more regularly again.

Thank you so much for all your support!


Tanya said...

Oh, I just HATE the silent tears. They get to me more than any other form of distress.

If the reluctance to bathe is for fear of uncovering the surgical site, is there any chance that she would bathe with her shirt still on? (If that's even medically wise. I'm not sure what can and can't get wet and that would certainly wick water all over her torso.)

It breaks my heart that she is mad at you. I just don't know what I would do if Meaghan directed her anger at having to go through any of the stuff she goes through at us. I hope she is signing I love you again very, very soon.

B-Mama said...

Hugs and prayers for continued improvement!

Susan said...

She's been through so much, and as she gets older, I suspect it is harder because she understands more, but probably not enough, like WHY. In a week, hopefully things will be pretty well back to normal. I hope there are no more silent tears and that she'll be saying she loves you (voluntarily) very soon. Hugs.

Janis @ Sneak Peek At Me said...

Sending you hugs Mama!!

Anonymous said...

Thanks for the update... sweet little Harlie. I am sure it does break your heart. I know you will be so glad when she is back to herself. Love Mike and Marcy

Anonymous said...

Oh I also dislike the silent tears... Miss T doesn't have them due to surgeries though...mostly due to sound sensory and if she hears any one else crying she hangs her head and these huge tears fall, cuts me to the core. I can't imagine how you feel when she is angry and hurting. Poor sweet pea. Sending gentle hugs and praying.

Oh hey can I use your photo of Harlie on my blog and your description of her? I am thinking the one you have on the side bar, on the right where you talk about each kiddo. What do ya thing? Your Call.

Loves and prayers

Just Diane said...

Oh Christy, my heart cries for your sweet girl. I am so sad that she is hurting. I hope she heals quickly and gets back to loving her bath. Bigs hugs. Keeping you all in our prayers.

Kim said...

Awww. That's all I can say. It just all sucks so much for her. And for you. I couldn't help but cry reading this post, and I'm NOT a crier. Well, at least I don't fancy myself to be one. It's just too much to think of her hurting and even worse, to think of you as a mom helpless to do anything to make it go away.

I hope you find comfort in knowing that you are one hell of a mom. Don't doubt it for a second. And yeah, with time, she will get better, she will forgive and it will all pass. But my God, for right now it just sucks.

I'm here, friend, and thinking of you often. Hugs!

Anonymous said...

The silent tears would break my heart too. She knows that you love her, and she loves you too. She just doesn't understand. Moms need the patience of Job. Just hang in there, I know that with time things always get better. Our prayers are still ongoing. Love to all. Kisses for Harlie. Love Ron and Sue