Thursday, March 5, 2009

Bad Night

Seamus' cough has never been this bad. He was up all night coughing and choking on mucus and none of us slept at all The only time he was remotely this bad, he ended up on IV antibiotics in the hospital. He's been on oral antibiotics at home for just a few days so hopefully they'll start working soon. If not, they want us to bring him into clinic.

I read all the other CF mom's blogs and I know this isn't all that bad compared to how it could be. I give so much credit to the families who deal with pulmonary stuff all the time but for Seamus, it's really rare so it's really scary to me.

Most of the time, I'm in denial. There's not a minute in a day that I don't think about Seamus having cystic fibrosis but I've always had the "comfort" of knowing he "only has GI issues". I read the other blogs and think, "Thank God, that's not us" but last night lying in bed helplessly listening to him, I couldn't help thinking "Okay, is this the beginning? Has the lung damage started?"

I try to tell myself that I'm overreacting. Of course he'll be better soon and his lungs won't be permanently affected from this episode. But how long will that be true? As a CF parent, I cling to the hope that a cure will be found before his lungs are damaged beyond repair, but as I lay in bed at 1:00 AM and hear my precious son gasping to breathe between coughing fits, it's really hard to hang on to that.


Alicia said...

I know what you mean.

Has his dr said when you should see an improvement before bringing him back in?

Chatty Family said...

As a fellow CF mom, all I can say is that I TOTALLY understand. My son has very few pulmonary issues, so it makes the times when he is struggling seem horrible. We are having one of those times right now as he just cultured psuedomonas again and is so -- mucous-y! You are not alone. We will probably be up in the night, worrying about our sons at the same time. Best wishes for some relief for you and Seamus.

Tooter's Mommy (Courtney) said...

I know exactly how helpless you feel listen to your child cough and knowing there's nothing you can do. It's heart-wrenching.

I do feel sure that a cure WILL be found and save our beloved CFers!

Rebecca said...

Hi Julie,

Sending you and Seamus lots and lots of hugs. Really hope that the oral antibiotics kick in soon and that his cough will soon improve.


Becky, Seren & Dylan xxx