Friday, January 20, 2012

No Sleep Study!

Harlie has pneumonia.  So, no more waffling about the sleep study scheduled for tonight.  My Mom came over yesterday to watch the boys so I could take Harlie to the ER and she called and cancelled our appointment for me.  I'll call to reschedule later.  It's really so typical.  And I didn't want to go anyway.  ;-)

Yesterday at school Harlie was really tired.  And if you know her at all - you know she's NEVER tired.  Like sleepy tired, I mean.  She might tire from running around and need a little break.  But, she hasn't napped in YEARS.

Terri (her nurse) said that she had to carry her to class.  I dropped her off and I just thought Terri carried her to the sidewalk.  Terri has to carry a lot of stuff.  She's in school herself, so she has her own backpack with her school work, and then she has the suction machine (which is over 5 pounds), Harlie's backpack (which she's not allowed to carry herself because of her spinal fusion) and Harlie's lunchbox.  To carry Harlie (who weighs 34 pounds) in addition to all that stuff is HARD.

She barely made it through circle time with her general ed class, but she participated more in her hearing impaired class.  Then when they went outside for recess, she laid down on the bench.  So, Terri took her inside her classroom to lay down.  Her teacher asked Harlie if she wanted Buster Bear.  NOOOO!!!!!  No more Buster, please!

Harlie said no.  Smart girl.

When her classmates came back in from recess, they went to art class.  Harlie fell asleep in there, too.  So, Terri called me and told me what was going on.  By then she had taken her into the clinic.  She slept in there until I came to get her.  I carried her to the car and brought her home.  I've been meeting Terri at school lately, so she doesn't come home with us (since her car is there).

She was on Day 7 of an antibiotic and she was getting worse.  I haven't seen her this lethargic in a long time.  So, I called Jennifer (another one of our nurses) and asked her about her symptoms.  She stopped by and listened to her lungs.  She listened for a long time and said she thought she had pneumonia.  She said she could hear fluid in her left lung.

So, I called her pediatrician and told him that.  He said to go to MCV's ER for x-rays.  So, I called my Mom and she came over to watch the boys so I could take Harlie.  When I got Harlie up from the couch to put her in the car - I had to carry her like a baby.  She did not even want to sit up to sit on my hip!

We got there and the doctor listened to her for like 30 seconds.  He said, "She sounds clear, but we can get a chest x-ray just to rule it out."  Of course I had to explain her lack of a fever.  Because that's always the first question I get asked - does she have a fever?  Well, no.  But, she never gets them, so please don't let that affect your judgment.

So, hours later, x-rays were taken and read.  Pneumonia in both lungs.   So, kudos to Jennifer to being able to hear what the doctor didn't!

They gave her a dose of Lasix to help her get rid of some of the fluid.  And they put her on a different antibiotic and gave her a dose of that, too.  Then they let us go home.  It was about 10pm by then.  She kept signing "car."  She was ready to go!  And when we left, she had a spring in her step and a big smile on her face.  I would give anything to know what she was thinking.  If only we could have a conversation...

Which reminds me...

At one point the doctor came in and asked me if it was okay if a med student came in to see Harlie because she had never seen someone with Goldenhar Syndrome.  I said sure.  But, it was a little weird to hear him talking to her and pointing out some differences in Harlie's face.  I'm starting to wonder what Harlie understands and thinks when she hears people talking about her, or her peers asking questions about her.  So, again, if only we could have a conversation.

Anyway, she's happier today.

She's home, of course.  And not complaining or whining or asking for anything (other than movies).  She's such a good kid.  Really.  She cooperated with everything and everyone at the hospital.  And she couldn't be any cuter when she gets x-rays.  She follows the instructions and holds really still.  She's something.

Well, that's it for now.  More later!



Lisa B said...

Poor Harlie. Glad she's happier today. Hope she gets over it soon.

Kristen said...

She is something, indeed! A very special, adorable something! I love her!

Susan said...

I'm sorry that she has pneumonia. What a bummer! I think it's good that the sleep study was postponed. I think what you should come clean about the cap before the SS because then the pulm can change the instructions. You'll probably want to have them cap her during the SS to make it worth all the trouble...and also try CPAP to see if it helps with OSA. E-mail me if you want to talk about it. The tech has to have orders from the doc with all those details. No sense going through the SS twice because at some point you'll want a capped SS before decann. Hugs. Hope things are better soon. Hugs to Harlie!

Kim said...

Hope that Harlie gets better quickly!! I am dreading sending Adelynn to school and exposing her too. It is so hard when you have such fragile big girls, and you can't keep them in a bubble any longer!! That picture of her smiling is the cutest!!