Clinic Visit 12/1/16


Arrival: 12:50 pm, Departure: 4:00 pm

Weight: 34.8 lbs

Height: 40.2 Ins

❤ Today we had a great appointment, and lots of new staff to meet. She did the Lung Function test again, and she is getting better at it each time. She is still in practice stage, and her numbers won’t count until about 6 years old. Here is a video about the test so you can see how it’s done.

❤ She did the throat swab this visit because we forgot to grab the cup from the basket. So she was very upset about that. They swab the back of her throat with a giant q-tip to see if she has any bacteria in her lungs that we should be concerned about. Here is a video about the Throat Swab process if you are curious. Usually she coughs up mucus to spit into a cup for them to take to the lab.

She has been culturing a light bacteria that the doctor isn’t concerned about the past year. He says that it is pretty rare to get a clear culture so it is better she cultures something not aggressive compared to the more aggressive options. You can read more about these germs here.

❤ She has been on the same Creon dosage since 9/5/13, so today we spoke to the doctor about this. They base the dosage off of weight and a few other factors, such as her stool quality (loose, if they have mucus and fat in them) and stomach bloating / gas or increased stomach pain. She doesn’t have any of these symptoms and in fact, in March we had a Pharmacy mix us and she was off of Creon for about 2 – 3 weeks without experiencing any of this issues. We wanted more information about why, and if we could test anything to make sure she is on the right dose.

He let us know that there is a fecal test but it really only displays accurate results in infants, and there is another test that can study the fat content but it also is usually inconclusive because we all of a certain amount of fat in our stools. He said that she is growing great, and isn’t concerned with her low dosage so that was great to hear. He said that in the future if we’d like, we can discuss this future with their GI specialist.

❤ Our Great Strides walk dates for 2017 were released and one of them is at a Water Park. I was slightly concerned because standing water does grow bacteria and is usually something that is a touchy area for those with CF. The doctor said that the parks do test their water often and while there have been cases of people catching some nasty bactiera in general (people not with CF) he said there isn’t an over concern for those with CF going to water parks. The our Chapter is probably working closely with the park to make sure everything will be safe for the CFers. I don’t know which date yet we are going to attend but it was good to have the reassurance.

❤ The doctor said that her lungs sound great, and she looks great!

❤ Cystic Fibrosis is deeply entangled with Anxiety and Depression disorders and the CF Foundation is beginning to take an active role in treatment for these in parents and patients. The clinics are starting to provide resources and tracking the endurance of these disorders in parents and patients. I think this is going to be great for everyone has CF is a lonely disease, and it’s hard to handle on many levels for all involved. Today we took surveys regarding our own experience with these disorders and discussed what was available for us, now and in the future.

We also spoke about how she is and has been involved in her treatments, and the why behind them. They said that it’s great that she knows all her medicines at this age, and why she needs them. We told them that the Respiratory Therapist let us know early at like 2 that we needed to start doing this instead of what many CF families to, which is creating pet names for everything. (such as shake shake for vest) If something were to happen to us, she needs to know the names of the medicine she is on and her disease so she can communicate her needs with others. We’ve discovered it has helped greatly with calming down the “fight” of having to do the treatments since she is involved in setting them up and understand why she has to do them. It’s like brushing your teeth to maintain dental health, she just has to do extra stuff to maintain lung health.

❤ There is a new dietitian at our client but we didn’t speak with her this visit. Usually many CF Patients meet with the dietitian at each visit.

❤ We also met a few other new people with the Clinic staff, but didn’t talk about anything significant. Her next appointment is at the beginning of March, hopefully we can make it through the rest of this winter without any illnesses.


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