When my daughter was first diagnosed with cystic fibrosis (CF) she was just a tiny, 6-day-old baby. I had all the fear in the world hanging over me regarding keeping her healthy. Even just a cold can be detrimental to a child who has a lung condition like CF. So when she got her first cold a few months ago, I was nervous. Luckily, that cold lasted about two days and she never developed a cough. The last two weeks, however, have been different.
After developing a fever two weeks ago, she ended up with a very runny nose, an ear infection, and the dreaded cough. We began increasing her therapy sessions with The Vest from two to four times a day: 8am, 11am, 4pm, and 7pm. It hasn’t been easy on her or on us, but it is the necessary effort we must make to try to keep germs from settling in her lungs and developing into an infection. That could win her a hospital stay. Despite the increase in treatments, her cough is still going strong and the poor kid threw up the other day during one of her sessions.
So tomorrow, we head to CF clinic to have her pulmonologist listen to her lungs and hopefully tell us she’s fine. While we are there, we’ll also discuss her poop – fun stuff. But after weeks of fluffy, messy poops, we sent a sample in for testing and it turns out that she does have a high amount of fat in it – something the enzymes she takes are suppose to alleviate to a certain degree. When her enzymes don’t do their job of digesting her food for her, she doesn’t gain weight. And when she doesn’t gain weight and then gets sick, she has a harder time fighting off the illness. Hopefully that’s not what’s happening right now.
Since it is the first time we are dealing with a cough, I am feeling mixed emotions. I’m grateful she made it to age two before becoming sick. But I’m also worried and anxious and guilty. I got too comfortable about her health. She had managed to stay germ free for so long that I almost believed she couldn’t get sick. What I forgot was that I was careful and overprotective and kept her away from germs, and that’s what helped keep her so healthy for so long.
Now I take the first steps in taking care of her after her first illness. I have to ignore my own fears and do what is best for her, which includes increased treatments and may mean adding new medicines and treatments to her daily regime. Am I scared? Yes. Will I let her in on that? No. I’ll do what I have to do because it is all I can do.