Dealing with typical illnesses with my CF-er

A few months ago, we went on a family vacation to the beach. Because it was early April, I figured the typical winter cold and flu illnesses were no longer a threat. We looked forward to a fun week of family time spent in the sunshine and salt water.

Enter the norovirus.

My two-year-old daughter was the first one struck with the bug and in hindsight, she began showing symptoms at the very beginning of the trip. Relatively speaking, it was mild and she was only down and out for a day while we were there.

Hard Hitter

Margo was next and boy, did it hit her HARD. Vomiting, fever, lethargy, diarrhea, and dehydration. The vomiting eased after a couple of days and her fever finally stabilized after a few spikes. However, the lethargy and stomach issues continued for almost a week. Not fun at all, particularly while on vacation, but as always, CF adds a layer of complexity to seemingly typical experiences. One night her temperature rose to 103—she had the chills and was vomiting. We came very close to taking her to the emergency room but first tried several things to get her fever down- lukewarm baths, cold compresses, Tylenol, and lots of liquids. Fortunately, we watched the temperature go down and stabilize, eventually even without the use of Tylenol.

For days, she had no appetite. It was a challenge to get her to eat anything of substance, particularly something with fat in it which she would need for her Orkambi to work. It seemed almost cruel to make her sit up and strap on her vest and nebulizer when she so obviously felt so ill. After speaking with her clinic team, we prioritized liquids and small, “fun” food like Trader Joe's dark chocolate PB cups to take with her Orkambi. Her meals consisted of peanut butter sandwiches and fruits like strawberries, bananas, and apples.

This is not fair

While I try not to give into pity parties, I found myself dwelling on how unfair this felt. I didn’t want anyone in my family to feel sick, especially Margo and particularly this vacation. She deals with so much, every day, just to eat food and breathe with ease. This vacation was something she was looking forward to for so long and she lost literal days to this illness. She tried to power through and experience some of the fun but you could see how tired she was. We continued to communicate with her CF clinic team and pediatrician throughout the week because it seemed to take so much longer for her to kick this.

The norovirus continued its path through our family, hitting me on our travel day back home (absolutely brutal) and my husband a few days later. Fortunately, it was relatively mild for both of us, particularly compared to Margo.

When it comes to Margo and typical illnesses like a stomach bug or a fever, I often feel like a new parent, constantly guessing and doubting my instincts. Anything with CF, I know what to do. There is a plan and I feel comfortable in my decisions. I don't like the circumstances but I understand them. This was a whole new ballgame for me.

Relief

It was a relief to see the spark back in her eyes when she woke up on day 6. Her appetite was back with a vengeance and her spirits were high. Fortunately, she wasn’t at all fazed that she had missed a lot of her trip due to the sickness—she remembered the good times she had and looked forward to when we could return to the beach.