Tuesday, December 22, 2009

She's Getting Better!

It looks like Harlie has turned a corner. A good corner. YAY!

She's been up a lot more - playing. So good to see! Murphy was making her laugh on Monday and he was having a great time interacting with her again. She is smiling again. Which makes all of us smile.

Her incisions are finally starting to look good. But the hives are still hanging around. It starts to look like they're on the way out - and then they flare up again.

She hates her feeding tube. She was on bolus feeds (which are similar to a "meal" in that it is given in a short period of time). But, in order to reduce the chances of her vomiting (which could be very bad with her jaw wired shut) we had to go to continuous feedings (lesser volume in her belly). At first we fed her 24 hours a day. She was in the hospital and not up and about, so she didn't care. But it didn't take us very long to figure out that she does not like to be hooked up all day. She would not get up and play if she was being fed. So, we had to change it up. Over a few days, we've gotten her down to two hour feedings, two hours off, etc. And then she gets fed for 10 hours at night.

She used to wear her feeding backpack without any trouble or complaint. But that was a year ago. I suppose she's forgotten. So, I had to force her to put on the backpack. She sat on the kitchen floor for over 15 minutes crying and pointing to her tube signing "off." It broke my heart! I so hate being a mean mommy!!! But she has to figure out that she CAN walk around while being fed! It's in her best interest!!! She just doesn't understand. So, tonight we put the backpack on her again (and her nurses have been trying during the day, too) and she just took it off, pointed to her tube and signed "off." Well, she was just going to have to sit on the couch then. Within a few minutes of Tom and I playing in the living room with Murphy and Cooper, she picked up the backpack and carried it to Tom for him to put it on her. He put it on and she joined us playing like no big deal. Oh boy is that girl stubborn! But, we are so happy that she finally got over the hump and will now wear it again.

I think we're going to have to get her out of the house pretty soon. She's got to be tired of being stuck in the house. But, I have to admit that I'm a little nervous about exposing her to the rest of the world - the world that doesn't know why she looks the way she does and all that she's been through. Not to mention the germs! But the first step is always the hardest, right?

Well, I have a lot more to write about, but I'll have to save it for tomorrow.

Thanks!
~Christy

6 comments:

Heather Lewis said...

so glad she is feeling better! hopefully it just keeps improving from here. Hoping the hives go away and stay away!

Janis said...

Do you have the Zevex infinity? have you tried the SuperMini backpack. I saw I another pic what looked like the Mini, but the black one is even smaller & might be easier for her. ((HUGS)) So glad she is doing better.

Susan said...

I'm so glad she's doing well and is getting up and about. I'm sure you'll get out of the house soon enough. Don't pressure yourself.

Allie said...

Light at the end of the tunnel is bright now. In February you will be so glad this is done.
Really, really impressed with the outcome of this surgery.
Time for Santa!!! And some old lady birthday situation?!? What??
Xoxoxoxo

Grandma said...

I am so happy to hear she is slowly getting back to her oldself. If we could just get rid of those hives. Did you try aveeno oatmeal bath...it does help soothe the skin and may make her feel more comfortable. Miss you guys terribly..

Lindsay said...

Glad she's on the mend and feeling much more like herself! Good news!!!