Today I wanted to share a little about Kaelyn's CF care in order to keep the mucus out of her small lungs, and maintain her overall health. This is a day in the life of Kaelyn:
Everything on this table is part of Kaelyn's daily CF care currently. For those of you who follow Kaelyn's story and know about her CF case, one thing you will notice that's missing from her daily routine are pancreatic enzymes. 85% of those with CF have pancreatic problems as well. Fortunately Kaelyn does not. Almost everyone with cystic fibrosis needs to take pancreatic enzyme supplements with meals and snacks. Taken by mouth, the enzymes go to work in the intestines to help digest food so it can be absorbed by the body.
1. Nebulizers – Clearing the Airways
Since inhaled drugs more easily reach the airways, they are common in CF care. Inhaled treatments can be given by aerosol, a mist treatment made from liquid medicines. In this case, the drug goes into a nebulizer (on left in picture) and is attached to a small air compressor (in back of picture). The compressor blows air through the nebulizer and makes a mist. CF patients inhale the small particles in the mist through a mask (on right in picture) or mouthpiece (front in picture) for several minutes to help clear the mucus.
2. Inhaled Medication #1 - Pulmozyme
CF is a complicated disease that causes your body to produce extra-thick, sticky mucus. Pulmozyme uniquely targets one of the causes of this thick, sticky mucus to help keep mucus thin and loose. Pulmozyme may help improve lung function and reduce the risk of infection in mild to moderate disease.
3. Inhaled Medication #2 - Albuterol
Albuterol is used to prevent and treat wheezing, difficulty breathing and chest tightness. It works by relaxing and opening the air passages to the lungs to make breathing easier.
4. Vitamins and Minerals
Most people with cystic fibrosis do not absorb fats properly, so certain vitamins, or "fat-soluble" vitamins, are not absorbed. These vitamins are Vitamins A, D, E and K. People with CF usually take these vitamins daily.
Kaelyn's main deficiency is Vitamin D.
5. Avoid The Spread of Germs
Cystic fibrosis puts the airways at risk for lung infections. There are, however, effective ways to lessen the risk. One way is to limit contact with known germ sources. Although germs are everywhere and cannot be avoided, one of the best ways to keep from catching or spreading germs is through effective hand-washing, whether with soap and water or alcohol-based hand gels. Everyone with CF should avoid unnecessary contact with people who have a cold or any other contagious illness.
I keep these mini ones in my purse and we recently got Kaelyn the ones she can attach to her bookbag to have at school.
6. The Vest - Chest Therapy
The Air Pulse Generator rapidly fills and deflates an inflatable vest, gently compressing and releasing the chest wall up to 25 times per second. This process, called High-Frequency Chest Wall Oscillation (HFCWO), creates mini-coughs that dislodge mucus from the bronchial walls, increase mobilization, and move it along toward central airways.
Here are some photos of Kaelyn getting treatments with her vest:
CF care is so, very important! It's daily, it's time consuming, but it keeps Kaelyn strong and helps our brave little girl beat CF every day! It might not be much fun for any of us, but keeping Kaelyn healthy and happy is our #1 priority!
