Be Home Soon!

A big thanks for all the prayers and support you all have given to Leah and our family.  Doctor is really pleased with Leah's progress.  She is feeling much better.  Her appetite is back and she has been gaining weight.  Her cough is minimal and her pulmonary function has steadily increased from where it was when she was first admitted.  Our plan is to stay in the hospital for the duration of her IV antibiotic treatment, which should mean we will be able to leave late Monday.  So the end of her first hospital stay is in sight.

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.

Her room is cheerfully decorated by the many cards she has received from her sisters, cousins, classmates, and church friends.  Earlier this week, she got the chance to skype with her class.  She really enjoyed seeing all her classmates and teachers.  She even did a magic trick for them.  Her days are so very busy with different people coming in, but this past week, we have been able to get some school work done each day. (Although, perhaps needless to say...this is not her favorite part of her day.)

You may often hear how getting a cold or flu is more serious for someone with CF.  Now, I understand what that means.  Leah tested positive for the entero/rhinovirus, which is also known as the common cold.  The doctors explained that the viral infection can stir up the bacteria in her lungs and cause the infection to become inflamed, leading to an acute exacerbation. 

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!