I’ve spent most of the afternoon and evening thinking about the results from Lexi’s CT Scan. I’ll be honest, I had hoped it would be as simple as an infection and some IV antibiotics. Hoping she would fit nicely into a standard treatment of care box. Wishful thinking I guess.
Lexi’s CT Scan showed that as a result of her severe asthma, she now has air trapping within her lungs. Her type of asthma not being well controlled by traditional asthma medications. This is most likely due to a strong genetic predisposition to asthma, complicated by her CF and also associated with her reactive EOE.
Lexi will follow a very rigorous routine of nebulizer treatments, inhaler treatments, and oral steroids over 30 days in an attempt to heal some of this damage. Those of you with CF are probably laughing, thinking isn’t that everyday? Yes, but taking it up a notch for us. On 10/24 Lexi will be admitted to the hospital, and during her already scheduled triple procedure the doctor will look inside her lungs, and may attempt to reopen some of the impacted areas of her lungs. If the 30 day treatment plan has not made significant improvements in her lungs, Lexi will move on to a more advanced group of drugs that includes injections. We obviously don’t want that for her.
We just want Lexi to feel better. She’s tired of feeling so worn down. Her chest always feels tight, she gets winded if she walks and talks, and the harder you work to breathe the more tired you are. As her mom I want a magic button to make her feel better.
I use pictures to help things make sense to friends and family. So I took some pictures from my research that help to explain what’s going on in her lungs.
Thank you for keeping our girl’s physical and emotional health in your prayers.