This Monday, we took Ellis to the CF Clinic to check up on her health. We go to clinic once a month. The visit lasts for about two hours, and we meet with a physical therapist, social worker, pharmacist, nutritionist, nurse, and pulmonologist (lung doctor).
With the physical therapist, we talk about how Ellis is doing with her daily "pounds" and will sometimes get replacement parts, as they can sometime deflate.
The social worker brings us up to date with informational resources about CF, and we also discuss insurance issues and programs available that provide medication benefits etc.
Our pharmacist then comes in to make sure that our prescriptions are being filled and will up any doses that need to be increased. At the same time, we meet with a nutritionist to discuss Ellis' diet and weight gain. It is important to keep Ellis at or above the 50th percentile in weight so she continues to remain healthy. It is also a sign that she is taking the right dose of enzymes with each feeding for her body to absorb nutrients. She is doing great! 17 pounds!
The nurse will then come in to take a cough swab from Ellis. It involves taking a long stick down the back of Ellis' throat, so we can test for any bacteria or infections that could be growing in her lungs (Ellis gets the gag reflex going with this test). It is important to keep up with this because, if an infection does come up in the culture, the doctor can treat it with the appropriate therapies immediately before things get worse.
Lastly, we visit with the doctor who happens to be at clinic that day (there are three), and he or she checks Ellis' lungs, nose and ears. We also usually discuss any drugs in the pipeline that may benefit Ellis.
As of this Monday, Ellis' lungs sound "beautiful and clear". That's what we like to hear! Go Ellis!
