Friday, January 4, 2013

Harlie is sick.

Harlie is definitely sick.  She is miserable.  I guess she has a cold.  I don't think it's anything more than that, yet.  Her sats are staying good - still high 80s to low 90s.  Wow, what a long way she's come.  It wasn't really that long ago that a simple cold would drop her sats drastically.  That's a comforting sign that her lungs are growing and that they're able to handle a little stress (despite the fact that she had two lung lobes removed at eight month's old).

The past two nights have been horrible.  Last night worse than the one before that.  On Wednesday night she had a terrible coughing spell that lasted about an hour.  So, I was up and down about 15 times in that hour.  Last night (Thursday night) was even worse.  Her coughing was spread out over the whole night.  I was up at least one or two times every hour.

I feel so bad for her, though.  You can see how awful she feels just by looking at her face.

After Terri left this afternoon, I really couldn't leave her side.  The second I left the living room (she was sacked out on the couch watching movies) she would start coughing and then call for me to come suction her.  She even used her communication device (the black thing in the photo) to say, "I need to be suctioned" all on her own with no prompting from me.

I know she can't help it, but I couldn't help but get annoyed.  All that freaking suctioning gets old!  Especially when half the time she really didn't need to be suctioned.  She was clearing it on her own, but for some reason she wanted to be suctioned.  I guess it must make her feel somewhat better, or she wouldn't have asked.  I don't know.

At any rate, going back to not being able to leave the room for a more than a few seconds is hard.  It took several trips into the laundry room before I could actually accomplish switching out the loads.  I took the boys to the gym with me this morning and when I got back, Terri said she couldn't make Harlie's bed because she would get up there and Harlie would need her again.  After a few trips up the stairs, she just waited for me to get home.  We had to change her bedding out because this morning there was some blood on her sheets.  I have no idea where it came from.  Her trach appeared to be clean.  There was nothing that I could see in her ear.  I don't know if it was just from all the coughing or what.  I was thinking that the last time we found blood in her bed she lost a tooth.  But, she won't let me really get a good look in her mouth to see.  And I didn't find a tooth, so who knows.

Despite feeling like crap, she did play with Rooney some.

Geez, Rooney.  Don't mind Harlie, just lay wherever you want.

She even smiled.  Which sorta proves that dogs are healing.
For this brief time she wasn't thinking about how awful she felt.
Tom made chicken and pesto pizza tonight (yum!) and while we were eating I looked up and saw Rooney's little head peeking from the other side of the table.  We NEVER feed him people food, but I guess he hopes we'll change our mind one day.

Harlie signing "sick" to me.  
When I tried to tube her water or food, she covered up her g-tube with both hands and flipped out.  Sometimes she really breaks my heart.   She handled the first two cans okay (she gets four in a day), but after that she wasn't having it.  I managed to get once ounce of formula with a couple flushes of Pedialyte.  Now that she's sleeping I'll sneak some more fluids in her.

Oh, and I forgot to tell you that the date of her sleep study is January 13th.  Less than nine days away now.  Awesome.  They actually called today to see if she was going to make it.  Now I have to ask, how the hell am I supposed to know that?  How can anyone guarantee you're going to be somewhere in nine days?  I plan on being there, yes.  Crossing my fingers that we get to go through the living hell that is a sleep study.

I have to share my friend Susan's blog post about her daughter's sleep study.  She has a few pictures of Ainsley all hooked up and that is the part that I'm dreading the most.  It's sticky stuff and Harlie HATES sticky stuff.  So, that should be a lot of fun.  Especially since they only allow one parent to stay, which means I'll be all alone to try to handle everything.  I can't wait.  It's going to be awesome.

Okay, must try to get some sleep while Harlie is sleeping.  I have no idea what's in store for us tonight.  And I'm supposed to run eight miles tomorrow.  So, a good night's sleep would come in handy.  Wish us luck!

More later!  It's already January 4th and so far, I'm sticking to my resolutions!  Although it's going to take some time to go through my e-mails...



Ann said...

I first read this post about midnight last night as I was setting my alarm every hour to get up and suction Jack. But I decided, misery does not always like company.

I am so sorry Harlie is sick and I'm sorry that so much of your time and energy and precious sleep is being sapped. I totally get the being annoyed. When you are tired, you become irrational. I don't even know how you have the energy to go out and run 8 miles.

Hang in there ....


Christy said...


Is Jack sick, too? Or do you always have to get up to suction him throughout the night??? Because if you, you're even MORE amazing than I thought before!


Ann said...

Ever since we've upped his fluid intake to prevent the kidney stones, he's required more suctioning. But, lately, he's requiring lots more suctioning. He doesn't seem sick, but who knows. Because he's staying awake so late and I don't want to stay up until 1 or 2am, I set my alarm to get up and suction him because I don't want his pulse ox alarm to be my alarm because that's not fair to him. I'm starting to go crazy with all the suctioning.