She continues to be in mostly good spirits and is handling being stuck in a hospital room fairly well. Since the weather has been so nice, she has been able to get outside for a short time on most days. It was quite the sight to see her challenge some of our CF clinic team to limbo. She has a slight height advantage, but that didn't stop Pam from taking the challenge :) This weekend, she enjoyed visiting with her sisters as they played hide and seek with their new walkie talkies and built a pretty amazing domino creation.
While we are so thankful that Leah is doing better, we also are realizing that when you go through a significant pulmonary exacerbation, rarely will you come out the other side unscathed. This leaves a mark on her lungs. While her pulmonary function is back almost to her most recent baseline, it is still not where we had been hoping it would be. Unfortunately, this is the reality of this relentless disease. And I don't like it!
On top of that, we are so very aware of the NTM infection that Leah has. She will continue to be watched closely - Culture, PFT, and Doctor visits monthly, X-rays every 3 months, and CT scans every 6 months. At her last CT scan in December, three nodules were present in her lungs. This would indicate that the NTM infection is not just present in her lungs, but also somewhat active. Her next CT scan will help us determine how quickly the infection is growing. As we move forward, please pray for discernment and wisdom as we consider what the best course of treatment it would be. And pray for this particularly resilient infection to be miraculously taken away from her.
Please continue to pray for Leah. Pray for protection of her lungs from further damage. We invite you to come along side of us as we pray and hope for a cure to be found!