Cystic Fibrosis: A Day in the Life of Azalea June

Here we are doing Azalea’s CPT. We do this twice a day at minimum, more if needed. We always start her Chest Physical Therapy (CPT) with two puffs of her ProAir Albuterol inhaler. With chest physical therapy (CPT), the person gets in different positions to use gravity to drain mucus (postural drainage) from the five lobes of the lungs. Azalea likes to watch silly YouTube videos while she gets her CPT. CPT takes roughly 21 minutes. We “bop” each area of the lungs for 3 minutes apiece. We do this every morning and every evening. Okay, so it’s time to make her some formula
and she was actually prescribed her enzymes at the beginning of the month, so we’ve been
on that for awhile and she’s been doing well gaining weight and she’s getting hungry, so
we have to make her formula. She’s on 24 cal(orie) Alfamino Infant right now. That’s what she’s
been on since she’s been out of the hospital, so. Perfect! And germ-x. And Then one, two, three, four,
five, six. I have to count it out loud or else I will forget where I’m at. And also she gets a little bit of salt in her formula, just a little pinch because she uses– she
expels so much salt throughout the day. We’re supposed to put a little bit of salt in there
as well. Alright. She’s getting mad. Do you hear her? She’s getting very mad at me. I
know, I know. I’m almost done. She’s like “I can see you! I know what you’re doing!”
Okay, now while that is heating up, we’re gonna mix her enzymes and I will show you
guys that. Germ-X Container. Okay, so she gets two of these little capsules emptied
in there. And she just gets a little bitty scoop of applesauce. We were doing yogurt,
but I think she was getting tired of it, so applesauce it is! And it’s just a little spoonful
with a bunch of little balls in it. I don’t know if you can see those little balls. So,
she gets her enzymes before every meal, so before every bottle she has to eat this first,
and then the bottle comes immediately after. And she’s been doing a lot better with these.
Usually, she just like, spits it out. She sticks her tongue out and the little balls
just come out. But, um, the last few days, she’s been doing actually a lot better. “Hey
mom” Hey, what? Almost ready! Ok, I’ll get you something. Hey, hey, are you hungry? Are
you hungry? Make sure you get sissy eating. Uh, this is hard.. You’re doing a good job. Nummy nummy nummy nummy! Hey, you can figure it out. You can do it! Look at you, Look at you! Wooo, woooo! Look at you, big girl! Oh my gosh! Oh my goodness! Look at you! Careful! Booger!
Azalea! (Azalea giggling) Is that baby giving you kisses? Haha, okay, she’s getting
serious about this. Oh my gosh, you like babies,huh? (more Azalea giggles) Hiccup! Okay, you gotta let it go. This is right before bedtime, after her evening CPT. (Azalea giggles) She also gets a multivitamin with Zinc, and an acid reflux tablet before bedtime as well. (Azalea giggles)

Leave a Reply

Your email address will not be published. Required fields are marked *