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Scared awake

September 8, 2017

I've been blind, I think.  No... not blind, just sort of dazed.  No, that's not the right word, either.  I guess what I'm trying to say is that I've been on auto-pilot without realizing that I am.

 

What I mean is this: Avie has her CPT and she has her meds, and we do her nebuizer when needed and watch her diet and keep her away from sick kids when we can.  BUT, I realized yesterday that it's not really enough.  I haven't been as diligent as I should be, as aware as needed.

 

Avie is sick.  Again.  Yes, all kids get sick- but anyone reading this blog (and I'm not sure anyone actually does) will know that it means something more for Avalyn to get sick.  This one hit her pretty hard.  She had a fever a coupe times, a hacking cough and her little body was just physically drained.  The cold hasn't been a particularly long one yet and so we haven't started antibiotics, but I did take her to the CF clinic yesterday after a little scare.

 

What scared me was when the nanny called to say that Avie fell asleep in the living room HOURS before she was due to take a nap.  Avie never does that!  So I rushed home and checked for a fever, then called the doctor.

 

She is fine.

 

Just sick.  We all get sleepy when we are sick.

 

But what we don't all get is Albuterol.  Don't worry about the word, the point is that she has to have an inhaled drug when she is sick... or DID, I guess.  Now, we have been instructed to give it to her every time we do CPT.  Sick or not.

 

We also have to boil the nebulizer ("inhaled drug machine") parts for 5 minutes every night.  Oh- and increase each CPT session from 10 minutes to 20 minutes... sick or not.  When she is sick, like now, we do this 4 times a day.  So each CPT session has a 10 minute nebulizer, plus 20 minutes of CPT.  That equals 2 hours of treatments for the whole day.

 

It does not include washing the parts after each use and then a sanitizing boil at the end of the day... that's on me.  Not Avie.  I mean, it affects me in the sense that it's just "one more thing" to have to do every day- which is totally stressing me out right now, even though I recognize that this is harder on Avalyn than it is on me.  And that's exactly why I feel the need to write this post.

 

This doctor appointment shook me.  I've been lazy.  Yes, that's the word I couldn't think of before... lazy.  I do a lot for her, yes, I don't need to be reminded of that.  I also don't need to be coddled or complimented right now.  It's just a fact: I've been lazy.

 

For example; sometimes I don't wash her hands before she eats.  Sometimes I don't wash my hands when I come in the house.  And, more embarrassingly, I've noticed that my CPT "pounds" are weak.  It does her no good to halfheartedly pat her on the back.  No, she needs firm, steady hits.  I have noticed this before, and I will request that my husband do her treatment when I need a break or when I know that my arms or tired (or is it my mind that's tired?).  I also want to say that we do wash her nebuizer parts... but I never boiled them at the end of every day.  And I hate myself for that.

 

I do not blame myself for her getting sick.  It isn't my fault... but I am taking it as a stern warning.  A giant slap in the face, a "get it right- or else".  The doctor actually checked on the amount of antibiotics she had this year and said, "It's okay.  She hasn't had too many... but if we see that she is starting to take them more often or is sick more often, then we will need to add something to her daily regimen.  I want you to know that if we add anything, it's life-long."

 

Well, shit.

 

I've been so focused on her weight and food intake that I've let the lung issues and maintenance slip to the back of the list.  I can't get lazy on this again.  We need to be diligent, CPT is necessary. 

 

All parents have to keep their kids safe.  My job, our job, is to help Avie stay alive.

 

 

 

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