Day Forty -five (part 3) – Waaaaay Behind and Worries

July 28, 2008 at 2:00 am (daily life)

OK.  When you scroll down you will see several empty posts.  I have obviously fallen  behind in my posting but I wanted to  keep the Day by day format going.  So, I’m  ‘reserving’ space for myself to write about each day as I have time.  It should be with  in the next day or so,  so, please keep checking in!

Now,  more importantly.   Emily is sick.  Any of my fellow CF moms who are reading  this know the magnitude of those three words.  THere’s  been a cough brewing for  a few days.  Yesterday it became clear that she was getting  something fairly serious.  Then, at 2:00 am, she woke up with the  seal-bark cough.  You moms know  the one.  I am fairly confident that this is just croup, except, with CF, nothing is ever “just” anything.  There is no such thing as “just” a sore throat, “just” a fever, “just a cough.”  Everything COULD be the start of something really big and  bad.

It is hard to be up for several hours in the middle of  the night with a sick kid.  But, CF really does add layers that make it a horrendous experience every. single. time. 

It  took us a while to get the coughing under control and to  get  cleaned  up.  Emily coughed up a TON of  mucus, and, unfortunatley, a lot of her overnight feeding came with  it.  We were  both coated – sticky and  smelly.  Worst of all, her favorite blanket was covered, too.  Watching  her cough was heart breaking.  Each spasm of coughing wracked her entire body.  This little girl who has looked SO healthy to me lately, so  robust and “normal” suddenly looked frail and thin.  I had my hand on her back to keep her steady as the  seal barks exploded from her chest.  I realized I  could  feel every bump in her spine.  Why didn’ t  I notice  that in the swimming pool a few days earlier?  What is it about the  middle of the night that brings  out every fear, and twists reality so you see it in its brightest light?

Daddy and I  tried to coax her back into her bedroom  to snuggle on the rocking chair after her improptu bath.   But, Emily insisted on going downstairs to watch television.  OK, fine.  THat’s why Noggin is on all night, now, right?  Actually, we ended  up with Sprout.  Daddy realized that  there  were 2 straight hours of Barney on.  Neither of  us thought that Emily would  stay awake to  watch it all!

As  I  lay on the living room floor wavering  between super-alert-and- listening -from -a- cough and, well , asleep, I had time  to think.  And worry.  Even though I pretty much knew that we were  looking at croup, I still spent time  formulating my “hospital” plan.  Where  would Isabelle go if Emily had to  go  in?  What would  we do  about Monday’s zoo class?  Who would  I  need to call, what would  I pack?

I kicked myself for all the times I’ve said lately that Emily is  having a great summer, health wise.   How dare  I tempt fate that  way?

Finally, Em fell asleep and we  made our way back to our beds.  In the morning  I called the pulmonologist at Children’s  hospital, and an oral steroid was persribed.  She’s acting as if she feels  great, and  there is only a cough every so  often.   I think she’s over  the worst of it,  but, stil I worry. 

Soon those  empty spaces below will  be full.  I promise.



  1. Tara said,

    I’m so sorry Em is sick! Yuck!

    I’ve only taken prednisone twice, but both times I felt better, instantly. Even though my PFTs hadn’t changed. It’s a bizarre safe feeling, you think you’re better, but you’re probably not. I hope the steroids give her body a break and she can heal quickly.

  2. Carla said,

    I remember my nights like that – I was a little older than Emily (maybe 3 or 4), and my parents would put me in the bathroom and steam it up to calm my cough. This happened night after night after night, until my parents realized I was allergic to all the stuffed animals I insisted on sleeping with. I know this probably doesn’t apply – it sounds like a one night thing here, but just keep it in mind.

    I’ve developed allergies to so many things you wouldn’t believe it. But I know CFers who don’t have any allergies, so it varies so much.

    It breaks my heart that you have to worry about taking Emily to the hospital when she’s so young. I feel so blessed that I wasn’t hospitalized for my lungs until I was 18. It makes me wonder if all the times I would have really bad coughing spells if my parents worried about taking me to the hospital and what they would do with my younger brother.

    Here’s hoping that Emily pulls through this just fine without the hospital.

    Lots of Love,

  3. Holly said,

    Oh how I understand everything you explained! I am so sorry you’re going through it right now. You think summer equals break and then wham! Ojaio was coughing in her sleep last night, and during her nap. In hopes that it is only post nasal drip I spent the whole day cleaning the entire house to see if that would make a difference. We’ll see. Hang in there mama! …………Holly.

  4. Elise said,

    I know that feeling. You’re right. A cough is never just a cough with CF. It’s always scary.

    Sounds like your little Emily is a tough little mama, just like Froggy. I can tell in her photos that she is a force to be reckoned with. It will take a lot more than a cough to knock our kiddos down. They are sooooooo strong! And you are too. Sending tons of love and CF Mama empathy! xoxo Elise

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