Tuesday, 27. October 2020
Ramona’s daughter, Nora, has cystic fibrosis. The hereditary lung disease was diagnosed during a newborn screening exam when Nora was two months old. Since then, the little girl has had to use a nebuliser twice daily for 15 to 20 minutes each time to inhale 6% saline solution so mucus does not build up in her lungs. Inhalation is a regular part of the treatment regimen for children with cystic fibrosis. Nora is now five years old. Using a nebuliser is a regular part of the family’s daily routine.
Ramona: No, actually it’s not.When Nora was a baby it was more difficult. She cried a lot. So we just shortened the inhalation period and just used the nebuliser for as long as she tolerated it, five to ten minutes. But I should say that we were able to be this flexible because Nora does not have a lot of problems with excess mucus and coughing. I don’t know if I could have been so relaxed about using the nebuliser if Nora had a lot of mucus like some other CF kids. We haven’t had problems since she was a toddler. We use the nebuliser consistently and regularly twice daily for 15 to 20 minutes each time without her fighting or any discussion about it.
Ramona: During the nebuliser treatment Nora is allowed to do something to occupy herself. Just sitting there and using the nebuliser, twice a day, even as an adult I would find that boring. In the beginning we had her sit on our laps and look at books or we sang her songs. Now we let her watch a kid’s show while she uses the nebuliser. She is only allowed to do this while she uses the nebuliser. So she likes using the nebuliser and sometimes even says: “Mama, it’s time for me to use the nebuliser again.” Of course because she knows that she is allowed to watch the telly then. And I no longer feel guilty about letting her watch videos. Because thanks to this we have no push back an no fights. She uses the nebuliser consistently, which is very important for her. That is what counts. Now her little sister also sits with Nora while she uses the nebuliser. Using a nebuliser is a normal part of our daily routine.
An article written by the PARI BLOG editorial team.