Saturday, January 24, 2009

CF Clinic

Breezy had her CF Clinic this week and going in to Nemours I thought this one would be a cake walk. Breezy has been feeling quite well this last month. But CF is a crazy thing and I'm finding out that you never get exactly what you expect out of it. I would not by any means call this a bad appointment because we came home so that tells you a lot.

We do however have a few things to monitor for the next couple of weeks.Two days before her clinic the dreaded oil in her stool came back.This is a concern because Breezy's CF is accompanied by terrable GI problems. Breezy did not lose any weight she is still 34lbs for this clinic but she did grow in height to 3ft 4.47 inches which had dropped her down from the 50% to the 25%. So now she is on creon 10 which has doubled her dose of enzymes hopefully that will fix the problem.

About a month ago Breezy completed a sleep study that came back with no airway blockage. However Dr.Lang wants to repeat the sleep study if her snoring continues. I'm almost positive we will be repeating the study because she has been snoring since the day she was born and she snores like a grown I can't imagine her stopping now.

The Currents Meds Are:
  • Creon 10
  • Nasonex
  • albuterol
  • zithromax
  • pulmozyme
  • tobi
  • source cf vitamin

And of course continue her Vest

Her chest was clear so that was a plus. And I guess we will just wait and see about all of the other things going in in my little Breezy. The took a throat swab and we are awaiting results on that.


Marcus said...

hey, thanks for the nice comment. We got to try out the vest in class. Apparently it's a life saver for kids with CF. It's great that Breezy is using it.

Anonymous said...

Hope the increase in creon does the trick!
Glad to hear the lungs sound great, tell her to keep up the good work on the vest!
Hope you have a great weekend!

Bri said...

Thats a lot on your plate Mama! Hang in there!

Cindy said...

You don't always get what you expect, that is for sure. Sorry that Breezy's BMI went down. It is really disheartening, especially when you are not expecting it. Hope the Creon 10 help. I am assuming she was on 5 before?

Zoe Isabella said...

Yeah, seems like we are all battling the weight thing right now. You are right, with cf, just when you think you have a handle on it, things look good, then, SLAP!! Doesn't seem fair. Did Breezy culture some bacterias before...just curious...because of the Tobi and Zithro. When will she be 5? Zoe will be 5 in April.
I pray everything goes good for you with her cultures! Hugs to you guys....Jada

Carrie said...

It seems we are battling the geasy stools alot too. One day it looks good the next maybe not. He has always been that way but seems to gain weight ok. He could stand to gain more but as long as he is gaining some I try not to panic!!

Zoe Isabella said...

Hi! No, Zoe is not on either presently. She goes on Tobi as needed (when cultures show she needs it...) as far as a maintenance Zithro...never. I was wondering about why Breezy was on a maintenance antibiotic, considering she was just diagnosed in Sept...I thought that was interesting. Do you guys see Lang every time?? Also...just curious...who is the blonde lady in a lot of your first I didn't know who was Breezy's mom...:)
Take care, love,

Alicia said...

I agree with what you said about CF. It's like you can't pin it down! Samantha has had such a hard time with GI issues, so I understand that constant need to up the dosage! Hope you've already seen a positive affect.

Ginger said...

You and Nate are doing an incredible job taking care of Breezy! We love you very much. Hugs, kisses, and prayers are being sent from Aunt Ginger and all of your friends and family in South Carolina!