It's always something...

Harlie is still sick.  Here's what's happened since my last update about her...

You might remember that I took Harlie to the ER for chest x-rays last Thursday.  We definitely caught her pneumonia early (thank you Jennifer!).  Because by Friday night, her lungs sounded worse and her sats (measurement of oxygen in the blood) were low.  She's always had low sats (thanks to her heart defects) but in recent months I noticed a big improvement.  She seemed to be hanging out in the high 80's - low 90's (which is fabulous for her!).  But, when I put the pulse ox on her at bedtime on Friday night, her sats were in the low 70's!  That's a big difference!

So, I hooked up all her equipment and oxygen and we went back to the trach collar for a few nights.  I had to put her oxygen concentrator on 3 liters to keep her in the 80's.  Geez.  She must have been feeling really crappy!

She laid around watching movies for a few days.  And we had to go back to all tube feedings.

By Sunday, she was on day three of her second antibiotic and she was acting much more like herself.  She was playing - and not watching TV.  Awesome!

What a big difference from our past experiences with pneumonia (which resulted in a hospital admission).  You can tell she's getting bigger, including her good lung tissue, and stronger.  It's really an awesome feeling to know she can fight off something like pneumonia with no hospitalizations!

So, off to school she went on Monday.  It was more difficult to wake her Monday morning than usual.  But, she's been laying around and we were off schedule, so I didn't think much of it.

But, around 11am, I got a text from Terri (her nurse) telling me that Harlie started vomiting in the cafeteria during lunch.  And she said that prior to that, Harlie refused to eat anything by mouth.

Let me pause for a sec to say that everything we do to make her seem more "normal" - was totally negated that day.  It can be pretty unsettling to watch her vomit - especially for kids.  While she's throwing up, she's also producing secretions from her trach that have to be suctioned.  So, you need to catch the stuff coming out of her mouth with something, while also using both hands to suction.  It's not as easy as it sounds!  Terri said it was so bad that someone had to go get a trash can.  Nice.

So, off to the clinic they went to let her lay down while they waited for me to come get her.

She really was FINE on Sunday!  I swear!

So, I cancelled her private speech therapy for that day (she has now not been able to go to this therapist since January 9th!) and on our way home, stopped to pick Cooper up from preschool.  She wouldn't walk - so I carried her.  While we waited in the hallway with all the other moms, Harlie passed gas.  And OMG.  My only hope is that since the hallway was crowded, no one would know where it came from.  And if they suspected it was from my general area, I'm really hoping they would blame the child.  I just wanted to grab Cooper and run.  I already feel like an outsider there!  Stinking up the joint isn't helping!

So, we get home.  Thankfully.  Because then Harlie had the worst, worst, worst diarrhea I've ever seen.

She's really going to kill me when she reads this one day.  I'm sorry Harlie!  I love you.  But I have to write about my traumatic experiences to stay mentally healthy.  

Poor, poor Harlie!  First pneumonia and now some stomach/GI bug?  What gives?!?  And how in the world did she catch the stomach bug?  The clinic attendant told me that the stomach bug has been going around her school.  But she hadn't been there since Thursday!

She pointed to her stomach and made a really sad face.  I asked her if it hurt and she said, "yeah."  Then, just to be sure, I asked her if she was hungry.  She said, "No!"  Got it.  So then I showed her how to tell me that her stomach hurts on her communication device.  Just so she can be really clear in the future.

She laid around again, watching movies.  And making lots of trips to the potty.  We went back to pull-ups.  Again.  I will say this - she sure is a flexible girl.  I know plenty of kids her age that would NOT want to wear a pull-up.  But, she doesn't care.  Or she realizes that's better than the alternative.  Either way, I'm glad.

Later on that night I wanted to give her just a little food.  She hadn't had anything but Pedialyte since before 11am.  Harlie was walking into the kitchen and when I walked toward her with the can of formula and  feeding tube in my hands, she turned around and took off "running" and jumped into the beanbag chair face-down, in the fetal position.

I guess that means your stomach still hurts?

I gave in.  I didn't give her any food.

Today is Wednesday and she's still home.  Living off Pedialyte.  I tried to feed her some real food today. But, she really fought me.  I only got a few bites of oatmeal and peaches in her.  I really want to trust her and let her make this decision.  But after years of fighting oral feedings, it's difficult to do that.  She's been so good with her oral feedings these past few months that I am trying to listen to her more.  I really think that will be better in the long run.

So, I tubed her a few ounces a little while later.  She refused that, too, by covering up her g-tube with her hand.  But, I was able to talk her into it.

So, we'll just see how she does with that.  I don't know what to do about when to send her back to school.  I'm afraid to push her too much.  I guess I'll wait until she starts eating some normal meals (whether it's by mouth, or tube) and staying symptom-free (of course!).  So, maybe I'll send her back on Friday.

At this point, she's already missed 14 days of school and left early several others!

Oh, and I caught a bad cold or something.  It started for me Wednesday night.  I don't know if I was just overly tired at the same time or what - but it really knocked me down.  I was registered to run the Frostbite 15k on Sunday, but there was no way that was going to happen.  I didn't want to walk into the other room, much less run 9 miles.

Tom made some homemade chicken noodle soup for me and luckily my nurses pitched in so I could get some rest.  It was convenient that both Harlie and I were sick at the same time.  Not.

Today I feel the best I've felt in days, so I'm happy about that.

So, that's it for this post.  I've been meaning to post these photos of Harlie for MONTHS (like five!), but keep forgetting.  So, I'm going to post them now.  Just because I think they are really funny.

Even though this one is out of focus, I love it.

Ahhh, it's the little things...

More later!
Thanks!
~Christy