Sunday, December 14, 2008

CF Update

We have been having the hardest time trying to teach Breezy how to spit up all of the mucus. She generally just swallows it and occasionally it gives her a tummy ache. But eureka yesterday she spit some out. It was great you would have thought this kid just won the lotto with all of the cheering and clapping I did. But I really felt as if it was a milestone in her treatment process.

We are waiting on her tobi delivery form the pharmacy so that she can start back up this month. I'm not sure if your children enjoy tobi but its the only nebulizer that Breezy has a problem with doing. She can't stand that it makes her cough.

The results for her sleep study came back. The doctors say that she does not have a breathing obstruction. So that is a good thing, but they want to do another sleep study in 5-6 months because while she is sleeping her breathing goes so shallow that she pauses breathing.

Her treatments are going well and besides a upper respiratory infection she has been relatively healthy this month. Her father and I are still in the I'm not sure what is CF stage. Like when Breezy got a fever, coughing and shallow breathing this month. I had already taken her to the doctors when her fever jumped so i called Nemours at 10:00 at night. I told the doctors she had a fever and she replied "Did you try Tylenol?" I felt like a dummy. My daughter is a newly diagnosed CF patient and that is scary. For some reason all logic goes out the door when I think she is breathing funny.Hopefully I'll get the hang of when to worry and when to reach for the Tylenol.


Cindy said...

You will get the hang of when to call the doctor, or when to call the pediatrician vs pulmonologist. I still have moments where I am unsure, and Reilly was diagnosed in May 2005! It is alot to absorb, and each time I think I have everything licked, something new pops up.

Yay for Breezy learning to spit the mucus out! :o)


Zoe Isabella said...

Like Cindy said, it will come...the figuring out stuff. That first year is hard, trying to decide which Dr. to call. I tend to call CF clinic if it has anything to do with a cough or breathing issues. That is great that she spit some mucus out, Zoe still swallows for the most part also. A friend of mine gives her daughter different coins(like a dime or quarter) for the different amount/sizes of mucus she spits out! One time Zoe spit out a huge glob while she was visiting her in the hospital, my friend said "Whoa, that is at least 50cents worth!" It was hilarious!
Have a great day,

Alicia said...

Yay for Breezy! I dread teaching Samantha that. That's a great idea of Jada's friend-I'll have to remember that.

I know what you mean about the difference between CF and just regular kid stuff, but Sam's dr would want to know about a fever with or w/o a cough. Sometimes I find that a gen ped or nurse treats Samantha less agressively than her CF doc. He basically just has a rule that I tell him all symptoms (small clinic, so we can do this), and then he routes us to wherever we need to go.