Memorial Day Weekend - Celebrating
Tuesday - Flare-up & Phone Call
I also received a phone message from Dr. Akhter. He wanted to talk with me about Leah's culture results. At our last regular clinic visit in April, her throat culture at first came back the same as it has been in the past. After a couple of weeks, I received a call from our nurse saying that her culture showed a very rare amount of an acid-fast bacilli, which further testing confirmed to be NTM (Nontuberculous Mycobacteria). This is relatively rare among CF patients (only about 10%). Our clincic has only had a couple of CF patients that have had this. Before treating it, they do a repeat culture to see if it goes away on its own without treatment.
Leah had a repeat culture done May 12. Dr. Akhter was calling us himself to tell us the results, but I missed his call for the second time that day. Ugh... now, we needed to wait until the morning to find out.
Wednesday - Culture Results
Thursday - Consult & Tape the Principal to the Wall Day
The first thing we need to do is determine if the infection is colonized (meaning it is present, but not causing problems) or if it is active (causing disease). Further testing is required to do this.
Our next step is for Leah to have a CT Chest Scan. It is scheduled for Tuesday, June 10. Doctor will be checking for enlarged lymph nodes and nodules. If that is not conclusive, he would do a bronchoscopy, which would allow him to do a culture on sputum taken from the lungs.
If either of these tests indicate the infection is causing disease, we would begin treating it with antibiotics for a minimum of 12 months. Doctor said we would continue treating it until we get rid of the infection and her culture comes back clean.
Doctor described this as a bump in the road. It happens and we need to deal with it. It is serious and it makes us cry out in prayer, asking God for protection over Leah's lungs, healing, and a cure. Oh, that a cure would be found soon, so that an infection like this will not be able to do the damage it is capable of doing.
On top of that, Leah is having a bit of a flare-up right now, which is most likely from allergies/asthma. Her PFT (Pulmonary Function Test) was lower than last time, which may be due to her asthma or the flare-up. Doctor wants us to increase her asthma medication. We are continuing all her other treatments the same, while adding an extra treatment during the day to help with her flare-up.
So, you can imagine my emotion when we took Leah back to school that day for a very special event that was held in honor of her. Thursday was Tape Mr. Munch to the Wall day. Mr. Munch is the principal at Leah's school (and he might just be the BEST principal in the world!) For every $1 a student brought in, they received a piece of duck tape to tape Mr. Munch to the wall. Why would Mr. Munch agree to such a crazy scheme? To raise money for the Cystic Fibrosis Foundation in honor of Leah!
I was completely overwhelmed (and cried of course) to see the love and support that the students and staff of Heritage Trail showed to Leah. That gym was completely electric with excitement as the kids were lined up to get their chance to tape Mr. Munch up on the wall. They raised over $1150! AMAZING!! Boy, oh boy, that is A LOT of tape. And, Mr. Munch was such a good sport. It took them over two hours to place all the tape on him. And then Leah got to move the stool out from under his feet at the end of the day. Yes, he stuck there!! Honestly, I think he was in a bit of pain by the time it was over... but he still smiled through it all (even after the secretaries and nurse smashed plates full of whip cream onto his face!) The kids loved it!
Words are not enough to say THANKS for such a wacky and fun way to raise money and help us find a cure. And it couldn't have come at a better time!
End of week - A Couple of Special Highlights
On Friday, we were invited to attend the fourth grade awards ceremony at school. Our middle daughter Rebekah had been chosen to receive the Outstanding Effort award from her teacher. When her teacher started talking about the student who was to receive this prestigious award, we had no doubt that she was describing our Bekah. (I was bawling, of course!) She always works hard and never gives up. She has worked hard all year long to do her very best work and I am so proud of her. It was such a blessing for her to be recognized for her amazing work ethic!