I have been meaning to send out an update on how Leah is doing health-wise, but I was hoping it was going to be a little different than where we find ourselves today....
In the Hospital with a CF Exacerbation
Leah missed the last two weeks of school as she was home sick. Even with increased treatments and oral antibiotics as home, she did not get better. So as her classmates were finishing their last day of school, Leah was coming in to see doctor. After a quick examination, he decided to admit Leah to the hospital so she could receive IV antibiotics to treat her CF exacerbation.
Leah had been running a fever on and off since Tuesday. But the pattern seems to be going down, so we are hoping to get through a whole day without one. She is able to move around her room and play more when her temp is down.
Doctor thinks this infection is most likely bacterial (still waiting on results from her culture to see if it will tell us anything specific about what we are fighting), rather than her NTM acting up, because it appears to be localized and her x-ray does not show NTM changes.
Leah will be at the hospital to complete a full 14 days of IV antibiotics. Two days down, twelve to go! Although being in the hospital is not fun, she is a good sport about it because she knows she will feel better when she is done. With school being out, it makes it easier for her sisters to visit, and that's especially nice because today is Bekah's birthday! We appreciate prayers for Leah to feel better and recover quickly from this lung infection.
As many of you may remember, Leah has a NTM (Nontuberculous Mycobacteria) infection, specifically an mycobacterium abscessus infection. Basically another lung disease on top of her CF. This infection also happens to be an extremely hard to get rid of because it is known to be highly resistant to most antibiotics.
Back in January 2017, we began treating her NTM infection with three months of IV antibiotics, followed by 18 months of oral antibiotics. Unfortunately, we were unable to rid her body of the NTM. Last September, we decided it was time to stop the antibiotics and give her body time off antibiotics. With the hope that the next time we try to tackle this infection that there may be newer more effective treatments available.
With Leah being in the hospital right now, Dr. Akhter asked an infectious disease doctor at the hospital to consult with us on her case. He is newer to the Advocate family, but in his previous experience he has treated a couple of CF patients with the m. abscessus infection. We are interested to hear what insights he might be able to bring to our treatment team.
Please keep praying for complete healing of Leah's body and especially of the NTM.
We are truly blessed. We want this to be a place we can share updates on how Leah is doing with her CF. As well as a place to share our hopes, dreams, and prayer requests. Thank you for loving and supporting Leah as she fights everyday to add more tomorrows.