A Day in the Life of a Cystic Fibrosis kid.
Many of you are aware of the Unleash Your Story fund-raiser for Cystic Fibrosis that the WNP has been supporting during the month of September.
I'm the mother of a CF child, and I promised I’d write up a little about what it’s like to have a child with Cystic Fibrosis. If you'd like to support our efforts to raise money for Cystic Fibrosis research, click here for my donation page.
We're trying to raise $3000 for CF research, and we're so close--at $2200 today! Please help by clicking here to donate.
First, you’d never know by looking at my Pirate Boy that he’s got a fatal genetic disease. He looks like a normal, healthy ten-year-old.
Some CF kids are thin and slight, and many are fair and pale (my son is more fair than his sisters, but I’m fair-skinned, so I’m not sure if that’s genetics or not). They also get what’s called “clubbing” on the tips of their fingers. Their fingers can get a little thicker at the tips.
Do this: put your two thumbs together, knuckle to knuckle. See the elliptical space between your nails? Lots of CF kids don’t have that space; their fingers are thicker at the ends. It’s not hugely noticeable unless you’re looking for it.
Anyway, for those of you who are wondering exactly what CF does: in a nutshell, it causes the body to produce a thick, heavy mucus that clogs the organs–especially the lungs and pancreas. This means that any sort of bacterial infection in the lungs is super serious, and that what might be a simple cold or flu can turn into a major problem for a CF kid. Usually, it’s complications with lung infections that cause the death of a CF patient.
Also, the clogging of the pancreas means that the digestive enzymes can’t move from the pancreas to the small intestine, and therefore fats and some other nutrients can’t be absorbed. This means that CF patients need to eat large, high-calorie meals and take digestive enzymes every time they eat…anything. Any. Thing.
So for Pirate Boy, I get him up for school in the morning and we do his morning breathing treatment. This consists of an albuterol treatment through an inhaler and spacer, along with a nebuilzed (misty) dose of Pulmozyme. Both of these inhaled medicines work to open the lung’s airways, and then to break down the mucus that could be clogging there. Also, Pirate Boy puts on a special vest that is attached to a machine that vibrates his chest.
He wears this vest for 20-30 minutes twice a day. This, along with the lung medications, works to keep those lungs open and the passageways clear, and to break down the mucus. It all works together.
Pirate Boy usually reads or draws or plays with his WarHammer figures, or pirates (he’s not called Pirate Boy for nuthin’) during his treatment. He’s used to it, and although most of the time he does it without hassle, there are moments.
So then, every time he has a meal or snack or anytime anything goes in his mouth (except water), he needs to take his digestive enzymes. He has to take them as he’s eating, or they aren’t effective. He also has to eat a high calorie, high fat diet. This becomes a problem with us for a few reasons:
1. The rest of us don’t need cheese or butter or whatever on everything we eat!
2. Pirate Boy is a veggie eater…and he doesn’t like Ranch dressing. (The nutritionist would think she’d died and gone to heaven if he would eat his veggies dipped in Ranch dressing. But not my Pirate Boy. He likes them fresh and raw and unadorned.) He doesn’t like cheese on his broccoli or cauliflower. Or on his hamburgers. Or fries. He doesn’t like tartar sauce on his fish. The kid eats wayyyy too healthy! (Ironic, isn’t it?)
3. We’re always nagging him to eat, eat, eat. I know he gets tired of hearing this, but it’s so important for a CF kid to eat often and well. Since they have to overcompensate for their malabsorption problems (ie, the fat and calories not digesting properly), it’s important for them to eat extra. And not only that, but being at a healthy weight makes it easier for them to fight off any lung infections when/if they come.
He’s old enough now that he gets his own snacks, and sometimes he forgets to take his enzymes. (Not always; he’s getting better.) If he does, what happens? Well, the food pretty much goes straight through him and out the other end. We can always tell when he’s missed a dose of enzymes!
So, this means every time he goes to a friend’s house or to any sort of event, he needs to take enough enzymes with him. And he needs to remember to take them. (That’s the hardest part.)
And then the kids see him taking medicine whenever he eats, and he does get tired of explaining why he takes them. Fortunately, he’s not at the stage where it bothers him or makes him feel “different” (although I know that is coming)…but as he puts it, he simply gets tired of saying that it’s medicine that he has to take to help him digest his food.
It’s really interesting and heartwarming to me that people who meet Pirate Boy recognize that there’s something different about him. And there is–and I don’t mean his CF. There’s an aura about him, a sort of glow, an energy or a deep happiness…something. I’m not kidding, and I’m not saying this because I’m his mom. He has a “way” about him…that’s the only way I can describe it.
When he was a baby, I went to a psychic at a psychic fair. I told her nothing about myself except that I was married and had two children. She said, “Your son. Does he have asthma? Or something with his lungs?”
“Er. Yeah. He does.” At first I thought she was going to say he was going to die or something!
She looked at me and said, “This boy is very special. He is going to really make an impression on a lot of people. Really make a difference in their lives…to a lot of people. He’s really special.”
Well, I already knew that. But she said that, and it’s stuck in my head for years now…and I’ve found it to be true. There’s something about Pirate Boy. Anyone who’s met him can tell you that.
So I thank you all so much from the bottom of my heart for supporting our endeavors here to raise money for him and for other CF kids–kids who aren’t at their optimal weight, who are in the hospital every quarter, who just can’t seem to get healthy. Thank you and God bless.
Labels: Colleen Gleason, Cystic Fibrosis, Unleash Your Story