Tuesday, February 26, 2013

Update

Harlie is sick.  Again.  It started last weekend (the 17th).  It seems like she has a cold.  But, just two days in this time, we had to turn on the oxygen.  Total bummer.  She's been on it 24/7 for over a week now.  She missed all last week of school.

I hate that she is missing so much school.  And not only is she missing school, but she's missing her therapies, too.  I like progress.  Even if it's super slow progress.  As long as we're working on something and moving in the right direction (even if it's at a snail's pace) - I'm happy with that (most of the time).  But, having everything come to a screeching halt because she's sick, totally stinks.  

So, when she was no better after the weekend, I thought maybe her pediatrician should see her, just to be on the safe side.  We went over everything, and came up with a plan.  For now, we are staying as is.  We are not putting her on antibiotics.  Looking back on her last illness, I can't say with any confidence that the antibiotics made any real difference.  Even after two different ones, it still took her 13 days to come off the oxygen and return to school.  I'm thinking that means it was a virus, which ABs won't help.  And that means she had horrible GI issues for nothing.  Um, no thank you.  

Her doc completely agreed with this thinking and is comfortable waiting it out a little longer.  He went on ahead and gave me a script anyway, so I can fill it if she gets worse.  He also said that given the circumstances (she really looks like she feels okay other than the increased secretions and oxygen requirement) he is okay with me sending her to school on oxygen.  He said if her teachers get the feeling she's getting too tired to continue, then pick her up, wait a day and then try again.  Even if she went for the mornings (the most important instruction of her day) I'd be "happy."

So, that's what we did.  Today (Tuesday) I took Harlie and Terri to school.  I only had a larger oxygen tank (the one that goes in the rolling cart), and that's kinda hard for Terri to take on the bus.  So, I just drove them myself.  Then I picked them up at 11.  I would love to say it went great.  But, apparently Harlie didn't feel like working.  Terri said that she wouldn't even write her name on a piece of paper!  And let me tell you - if Harlie doesn't want to do something, good luck getting her to do it.

It's such a struggle to know what to do with her.  I desperately want her in school, learning and playing like a kid should.  But I don't want to push her too hard, either.  My first thought was that I should send her back tomorrow, so she knows I mean business, and she has to work when she's at school.  But, I have to believe that if she didn't want to write her name, it's because she really doesn't feel good.  She can't fake low oxygen sats.  I can't imagine she would manipulate this kind of thing, either.

Sometimes I can't believe how incredibly skewed my perspective is.  She's been through so much, why can't she just carry on with a cold?  And then the reality of her medical fragile-ness hits me.  As strong and amazing as that 40 pounds of little girl is, she's still dealing with a fragile body.  With less lungs.  And a heart that has to work really hard (and that's been through so much).  And that sucks.  I'm thankful for all she can do, and for every day with her, don't get me wrong.  But, it still hurts to know what's true - no matter how many doctors she has, no matter how many surgeries she's had.  And it makes me sad to think of all she misses out on, and all the pain and crappiness she has to feel and live with.

So, after a lot of thinking... I've decided to keep her home tomorrow.  Even though I know it's probably the right decision, I still hear voices inside me saying, "But what if tomorrow is better and she can learn AND be sick at the same time?"  I have to tell those voices to shut it.  I have to accept what she can and cannot do.  And I have to put her health first.

I'm ready for this winter to be over.  It's kicked her butt.

Thanks and more later!
~Christy



3 comments:

Susan said...

Don't second guess yourself about keeping her home. Rest (and isolation, schools are germ cesspools) is the quickest route to recovery. RSV is tough on trached kids. And I would think Harlie's lungs and heart would make her tire more easily and need that rest even more. When Ainsley gets RSV she sleeps most of the day(s). I would hate to see Ainsley miss that much school too. I'm sure any parent would feel torn. I hope she's feeling better soon.(((HUGS)))

Anonymous said...

Prayers for a speedy recovery. Harlie is such a tough little girl.
Love from Pittsburgh, Sue

Beverley said...

Can her IEP, state that she have home bound or work sent home when she is unwell?