Last Friday was Bethany’s CF appointment. This time I decided to take my camera and document her visit — something I have never done since she started going to the CF clinic. In case you don’t know what cystic fibrosis is : Cystic Fibrosis is a life threatening disease that affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that —
- Clogs the lungs and leads to life threatening infections that cause lung damage.
- Mucus also can block the digestive tract and pancreas.This mucus stops digestive enzymes from getting to the intestines to break down food.
On Friday, Bethany had the usual done — weight, height, blood pressure, check her heart, pulse-ox, throat culture and she had to blow the candles out on the birthday cake (on the computer, of course) to check lung function. The thing I worry about most at this time is that she does NOT culture Pseudomonas. Pseudomonas is a bacteria that can be difficult for people with CF to get rid of and can cause lung damage. She usually doesn’t culture much — Staph, but that’s about it. I feel blessed and just hope and pray this culture is ok.
Bethany has actually been a very healthy little girl. She has never been hospitalized for any CF related illnesses and is very seldom sick. She does occasionally have a cough that needs an antibiotic for about 15 days. She gets two albuterol treatments, two hypertonic saline treatments, two 30 minute sessions on her vest (airway clearance system), one prevacid, one CF Source vitamin, and approximately 16 Zenpep capsules each day. She is very good about not complaining about any of this. She can even pop 4 Zenpep capsules in her mouth and take a drink and swallow them all at once. I don’t know if I could do that. Getting her to gain weight is a problem, and we are constantly trying to get her to eat. Most people with CF have trouble gaining weight and keeping it on. So, we work very hard to get Bethany to have snacks between meals and eat high calorie foods — if we don’t, we will really hear it from the nutritionist at her appointments. Checking her weight is always a little stressful for me, as it is not uncommon for the doctor to tell me she is not gaining enough and that her BMI is too low.
So, a few pictures from her check up.
Below, she is watching Rudolph The Red Nose Reindeer — The TV is the one fun thing there and she really gets into it. That is probably because we don’t watch much TV at home. I don’t know what was happening but she doesn’t look very happy about it.
Waiting for our car so we can go home. Katie went with us to keep us company.
