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.
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!
There's a First Time for Everything
BUT, this is a first that we didn't want... but knew to expect at some point. Please pray for Leah. She is having a significant pulmonary exacerbation and was hospitalized on Tuesday. This is her first hospitalization. So everything feels a little traumatic, but she is such a trooper!
She had been home from school all last week with increased cough and congestion. We thought she was probably fighting some type of virus. But rather than getting better over the weekend, her cough worsened and was deep and persistent. She also ran a high fever and had very little appetite, so she barely ate anything.
We brought her in to see her CF doctor on Tuesday. He wanted to examine her, get a chest x-ray, and run some tests. Noticing the changes in her chest x-ray, he decided to admit her to the hospital to recieve two antibiotics intravenously. She started both IV antibiotics on Tuesday and will need to be on them for 14 days. We expect her to be in the hospital for at least one week, or possibly the full 14 days, depending on how she does.
Leah had a PICC (peripherally inserted central catheter) line placed on Wednesday, which will stay in for the duration of her antibiotic treatment. This allows her to move around more freely, as it is in her arm, compared to the IV that was orginially placed in her hand.
As you may know, we have been concerned about the NTM infection that Leah has. Doctor does not think this is from the NTM infection. Rather, this is most likely due to a pseudomonas aeruginosa infection, a typical CF pathogen. Even though Leah has not cultured pseudo in her throat culture, he suspects that it is present in her lungs. He expects her to feel much better as we treat the infection.
She's being well taken care of and is mostly in good spirits. She especially cheered up when her sisters came to visit last night. Between her different treatments and our regular CF clinic team visiting throughout the day, there seems to be a constant flow of people coming in and out of her room checking on her. She even had a magician visit her today, who taught her how to do a magic trick.
We will keep you updated as we are able. We appreciate your prayers!
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.