October 11, 2008

CF Talk

I know I missed my monthly "CF talk" on the 8th. I was going to talk about the quarterly appt, but since it was more eventful than I expected I talked about it early. I think I had had about all the CF I could take! Here are a few random thoughts, though:

1. "We may have to admit her"-those are scary words! With Sam having CF, we live with this odd mixture of reality and denial of the disease. We've always known she would eventually be admitted. CF "tune ups" are usually about 2 weeks long, but the ominous phrase had never been said to us. Somehow I think I will be just as shocked the first time she actually has to be admitted.

2. As you know, we went back to the hospital 2 days after our appt to get her O2 levels checked. They were up, but Sam's weight had gone down. She lost 1.5 lbs in 2 days!!!!! Weight is always a constant battle. We have been off the steroid for 3 days and finished the antibiotic yesterday, and she is gaining again.

3. Samantha has entered a new level of maturity in her illness. I don't know if it's just that she's getting older or if she "sensed" the urgency or concern during this particular sickness. She's starting to take ownership of her treatment. For example,
  • If she asks for something to eat, I'll say, "After breathing treatment". We can't do chest PT after she eats, but they are combined in my mind (breathing treatment/chest PT) because we do them back to back. I just don't say the chest PT part. But she'll correct me every time, "Breathing treatment AND love pats (our phrase for chest PT)". Yes, Baby Girl, that's right.
  • She has been a CHAMP at liquid meds. Prelone (her steroid) tastes awful, and she is drinking it all down like it's juice. More importantly, she is initiating requests for medicines. If I'm getting something for anyone, she comes and asks for "medicine". Or sometimes, instead of asking for food when she's hungry, she'll ask for enzymes. She knows she has to take them before she can eat anyway!

Next month: Video of breathing treatments and chest PT

3 comments:

Stephanie's Mommy Brain said...

Thanks for sharing these random thoughts.

Lil' Chris' Mom said...

That's great that she is learning so much!

I can't wait to see the video's next month, b/c I have wondered how a breathing treatment goes. My son only does the Vest. Does Sam do the Vest? Is that what you mean by chest PT?
M

Marc and Charity said...

Wow, I am humbled by this...after my last post...and thanks for sharing about your "love pats" that's so cute. :)