Here we are! The first Monday of July! Today I’ve got some advice for parents.

Coming Home From the Hospital

The transition back to normal life from an extended stay in the hospital, or really even just a course of IV’s at home, is easier said than done. I always like to look at courses of IV antibiotics or hospital admissions as learning moments. How can I make sure that doesn’t happen again? Sometimes I fail and other times I succeed, and that’s okay! With little kids, the onus for learning falls just as much upon the parents as it does the kids. Ultimately the best way to treat cystic fibrosis is in a consistently aggressive way. Parents must maintain the level of care that patients receive in the hospital once the child heads towards freedom. Returning to normalcy following a course of treatment also gives the families the opportunity to redefine the CF routine. What worked or what didn’t work before heading towards an admission? How can you tweak it? Was your child eating properly, sleeping enough, spending enough time doing quality treatments? Remember, the CF routine is never set in stone, it must be able to adapt to the changing needs of your child’s life. That’s the important part – your child is living with cystic fibrosis, not you. As children grow older, their needs and wants change in life. The routine must adapt with them. Use the time after an admission to institute that change. Work with your child!

Coughing is a Good Thing! 

Too often do I come across parents who fear their child’s cough. The CF cough is equal parts annoying and necessary. The essence of cystic fibrosis is found inside our thick, sticky mucus. It’s the mucus and the nature of our lungs that allow for the development of chronic infection. Infection is what often kills people with CF or quickly sends us towards transplant. Kind of morbid, I know, but sometimes the truth hurts. Chronic infection is a serious enemy. As such, it’s important for us to clear that mucus from our airways, which I suppose explains our Vest/Percussor therapies and Hypertonic Saline use. It’s better out than in! To the finely tuned ear, the CF cough can also indicate a patient’s health. My lifelong friends, parents and whomever else I’m super close with can tell when I’m getting sick from hearing my cough. I suppose I can tell too, but it’s another outward indication of our otherwise invisible illness. As I always say, it’s great to have a few ears around me. The changing sounds of my coughing and breathing are usually what allow my support system to act as another ring of defense. I often fail to admit to myself that I’m getting sick (I call it CF stubbornness), and only do I come to grips with it when a friend, family member or, even in some cases, my girlfriend brings it up. The CF cough is useful for both clearing our airways and serving as a larger indicator of our health.


Stop Using “We”

This is something that I used to overlook, but only more recently have come to see in a different way. A lot of the time I see parents using the collective pronoun, “we” when talking about their kids with CF. For example: we have an appointment coming up; we just started Tobi; we are admitted in the hospital; we have a PFT tomorrow; and so on. YOU don’t have a PFT tomorrow, YOU aren’t inhaling Tobi, YOU aren’t sitting in a hospital bed, YOU aren’t coughing up blood, and YOU aren’t living with cystic fibrosis. Your CHILD is living with cystic fibrosis. Saying “we” belittles your child’s fight with cystic fibrosis. My parents never used “we,” it was always, “Gunnar isn’t doing well and is starting IV’s tomorrow” or “Gunnar is using a new enzyme” or “Gunnar is in the hospital for the next few days.” I am the one living with cystic fibrosis and they are supporting me. Now, I’m not saying CF isn’t a family affair. It is, 100%, but at the end of the day, your child is the one living with CF. He is the one struggling to breathe; he is the one who has to deal with countless needle pricks, hours of inhaling medications and days missed because of time in the hospital. Yes, you, the parents, have it hard too, but you’re supporting your child’s fight against cystic fibrosis, not living with it!

…and that’s what I’m thinking about this morning!