CF Checkup

On Wednesday, my mom, me and Ollie ventured out in the cold and headed to Birmingham's Children's Hospital for a CF checkup. Since our last visit in November which took over 4 hours, I have been dreading this visit. Well, to my surprise, it all went very well. Although the visit did take around 2.5 hours, we had plenty of time with Ollie's doctor and nurses and received a good report. As many of you know, at our last appointment, Ollie's culture came back negative for pseudomonas (bad bacteria that grows in lungs of cfers). She has remained on an array of antibiotics to keep this bacteria from growing. At our visit they did another culture to see if it has stayed away. I did find out from O's doctor, that pseudomonas could still be present even with a negative culture. Boooo! He feels that if this culture is negative it is a good sign that the bacteria has left the building. Even so, Ollie will always at risk for pseudomonas. At each visit we meet with a pharmacist, an RN, a social worker, nutritionist and her doctor. We go over her current prescriptions, diet, weight, questions and upcoming treatments and studies. This was the first visit in which they were all pleased with her weight gain...thank goodness. We have been adding butter to everything she eats to make it high in calories and yummy too. Lucky kid! It has paid off. Ollie now weighs almost 16 lbs and is in the 21st percentile, which is wonderful considering she was in the 3rd when she was first diagnosed. Yay! More good news we received was that we can now use a different treatment method for administering albuterol (inhaled medicine for opening airways). Instead of the nebulizer that takes around 10 minutes, Ollie will get an equivalent dose through a puffer. This alone, will cut down her treatments significantly. Wooo hooo! Other than that, we are waiting and praying that the pseudomonas stays away. If so, we will have the opportunity to participate in an inhaled hypertonic saline soluntion study (basically a breathing treatment inhaling high doses of salt). Because CFers don't have normal salt transport in their body, this treatment is suppose to help break down mucus in lungs, therefore helping with breathing and reducing the risk of lung infections. I'll keep you posted on the study. Other than that, she is wonderful! Told you it was a great visit!!