June 10, 2019

Tentatively Discharged




Azer did his second PFT since he got here, and it was a little higher than last week's. He was annoyed that it wasn't significantly higher given that he had just done a breathing treatment and he felt really clear.

Azer's ABPA and Aspergillus test finally came back, and it looks negative for the most part, but the Pulmonologist said his IGE is still high, and there were particulates of aspergillus antibiodies evident. I'm not exactly sure what that all means, but she said basically we will go home continuing the IV antibiotics. At CF clinic, if his PFTs decline, they will do a CT scan to get a definitive conclusion of if he has ABPA nor not. If it turns out he does, he will either be readmitted or start a course of antifungal through his PICC line. 



Now begins operation "Hospital at Home" featuring Azer's mom as resporitory therapist, pharmacist, nurse, physical therapist and more! 😆




The Job

This kid fights every single day. Even when he isn't in the hospital, or on IVs, he has to work every single day. Pills taken with every meal. Breathing treatments to slow the progress of this disease. Exercises and stretches to keep his body from falling apart so quickly. Running and coughing to clear the thick, sticky mucus from his lungs. Boiling and steaming nebulizer cups after every use. Waking up in sticky formula because something from his G-tube came lose in the night.

Sometimes it can be hard to see your child fight so hard to breathe at times. He just keeps pushing. He never gives up.

Don't take the health of your kids for granted. This boy of mine has never woken up a day in his life and missed a breathing treatment. He has never had a meal digest perfectly normal. He has never known a day where he hasn't coughed. If we have a simple day trip, or just a weekend stay somewhere, we can't just pick up and leave. It takes real planning to make sure he won't run out, and has everything he needs to make it just a few days.

There is no "easy day" with Cystic Fibrosis.