1st CF Clinic Visit

We went to the Cystic Fibrosis Center at Vanderbilt to meet with Gabrielle’s CF care team. We met with 8 individuals all over a two and half hour time frame. There are at least two more people that will be on her CF care team in addition to her primary pediatrician and us. We got a lot of information in this short amount of time and we told that there is a lot more information and that CF is a very complicated thing, which is a good thing. They also said to be careful about where we get our information on the internet. They told us that the two sites that we have been looking at are the best two to use. www.cff.org and www.esianson.org

To determine Gabrielle’s treatment they will have to evaluate her and get to know her over time. Treatment for CF is based on the individual patient because each patient is unique. To start with and for the first year they are focusing on nutrition as the primary treatment. Gabrielle is below average in her weight so we will be mixing a higher concentration of formula. This will give her more calories per ounce of formula so she does not have to take as much at each feeding. In the coming months we may start adding salt to the formula and she will start taking vitamins.

Another treatment which we began tonight is chest percussions. We will be tapping on her chest, sides, and back trying to break up any mucus that maybe in the different lobes of her lungs and move it to the main tubes so she can eventually cough it up. We will be doing this twice a day beginning with 5-6 minutes each time with the duration increasing based on her age and other factors.

Each time that we go to the CF clinic they will taking a throat culture to look for bacteria which may be in her lungs. They will also be running a test to see if the enzymes from the pancreas are making it to the intestines. These enzymes are what breaks down the food so the nutrients can be absorbed by the intestines into the body. If she does not have any enzymes or not enough enzymes she will have to take enzymes orally prior to every time she eats.

We have a social worker as part of the CF care team that will help us with our work, daycare, insurance, and many more things. There are three CF nurses that we can call with questions and if they don’t know the answer they will text the doctor and get the information for us. They will also help us determine when we should take Gabrielle to her regular pediatrician or bring her to the CF care center.

We go back it two week for another information overload and to find out what changes need to be made in her treatment and any additions to her treatment. For the first year will be visiting the CF Clinic at least once a month.

Thank you for your continued prayer.

May God Be Glorified,

Gabrielle, Jeff, and Ashley