A Year With CF

So, it has been a couple weeks over a year since we found out that Hyrum has CF. It’s almost been a year since we started having to do his treatments.

I remember how upset I was when we found out- it seemed like the world as I knew it was ending. And you know, I was right. Pretty much, the world as I knew it did end. But I think that was partly because everyone’s lives change when they have a new baby. And now we have this different life than I planned, but it is still a pretty awesome life. Better than most, I think.

For those of you who wonder, here’s what a day in the life of a toddler with mild CF is like (for those of you who don’t wonder, I would skip reading this and just see the cute pictures):

When Hyrum wakes up, I try to feed him right off the bat. It’s usually a whole milk yogurt mixed with Duocal (a highly soluble calorie powder) because the doctors tell me this kid needs to gain weight or he might need a feeding tube. So, for about twenty minutes I make sure he has just enough distraction (but not too much) that I can sneak in as many bites as possible into his mouth. The successfulness of this varies greatly from day to day. Sometimes it’s just two bites, other days it’s 8 ounces of yogurt. Lately though, it’s more along the line of two bites.

Then I give him three finger-fulls of salt, some sort of liquid antacid, and his vitamins. I try to get him to wash it down with his whole milk/Carnation breakfast drink mix/Duocal mixture, which again, usually does not go well.

And then Hyrum’s off! He plays and gets into things, just like any other toddler.

He LOVES going outside, playing at the park, and getting the mail. He likes getting into the bathroom, pulling everything out of my top office drawer, and pushing around laundry baskets. Typical toddler stuff.

Then about half an hour after he ‘eats,’ I start his morning treatment. I give him two puffs from an inhaler-type thing and then do chest percussion for 25 minutes on eight different areas of his lungs, front and back. I think I’ve posted about this before. Usually while I do this, I watch Gilmore Girls. And so does Hyrum lately, since he won’t sleep for this anymore.

(We can’t do his treatment standing up anymore, the kid is way too big for that. We do it on our laps with him on the Boppy).

Then more play, a nice, long nap, and maybe some afternoon errands. Oh yeah, and more attempted ‘feedings’.

Feeding him during the day, I usually have a rule of four. I will only try four different items that he refuses before I give up. This is to help my sanity, since I attempt to feed him every two or three hours. Believe me folks, I have tried everything. Cheese, quesadillas, peas, bagels and cream cheese, Oreos, cookies, candy, PB & J, crackers, hot dogs, pasta, etc. He used to actually like a lot of these things and would eat at least some of one of these items at each mealtime, but I think he’s trying to go cold turkey. As in, trying to stop eating all together. So, I have had to revert back to baby food, which I can sometimes get him to eat maybe one a day (mixed with Duocal). However, he will usually drink a couple of his super-calorie loaded drinks, so he still hits about 1,000 calories a day. But his dietician wants him to get 1,400 calories a day, so obviously the feeding tube drama is hanging over our heads right now :(

Anyways, when Ryan gets home we’ll usually begin his evening treatment. It’s the same as the morning treatment but with a 20 minute stint with a nebulizer and some $40/day medicine at the beginning. Ryan will usually wait till Hyrum is asleep for this one, because if he isn’t, Hyrum will scream bloody murder the whole twenty minutes. That’s because he hates having the mask on his face (what toddler wouldn’t?). Ryan watches Lost during this part, which is the only thing that makes it bearable for him :)

(He likes to chew on his old beater, the thing we use for his chest percussion)

While Ryan does that, I boil water for the nebulizers and soak his attachment for his inhaler in soapy water for 15 minutes. When they’re done with the nebulizer, I hand wash it and boil it for five minutes. Then it all dries on a paper towel overnight. Wheee!

Then Hyrum plays some more, we try to feed him, he gets a bath, we read family scriptures and have a family prayer, and put that little cutie in bed.

We also go to the CF Clinic monthly, where he sees a social worker, a dietician, a doctor, a nurse, a pharmacist (I’m not sure that’s her official title..), and a respiratory specialist. I also tend to have to go get some sort of labs (blood tests, X-ray, fecal fat content, etc.) done once a month. This is on top of his regular doctor visits, so for about a month and a half there I went to do some sort of medical thing for Hyrum once a week.