Fortunately for our family, Kaelyn was diagnosed with atypical CF very early on in her diagnosis. At this time, our primary concern is keeping her lungs healthy and functioning properly. Most individuals with CF will suffer from both lung and pancreatic/digestive problems throughout their lives. For Kaelyn however, her pancreas is fully functioning on it's own - meaning she doesn't require the high intake of enzyme pills to digest her food properly. I'll never forget the day we found out that news. Around 85% of the CF population is effected by digestive problems and poor growth, so it was a blessing the day we heard Kaelyn was pancreatic sufficient! She's steadily been on track with her growth over the past 3 years and is currently in the 90th percentile for height and 50th for weight.
Last night, Chad and I opened a new chapter of learning in our book of CF care for Kaelyn. Last week she finally received her airway clearance vest for CPT rather than us administering CPT manually (by tapping on her chest and back). Around the age of 3, kids are old enough to be fitted for a vest and at Kaelyn's last CF appointment she was fitted and sized for her little pink vest.
Learning to use the vest and how to care for it is pretty simple. The vest itself consists of 2 layers, the outer layer which Kaelyn chose pink as her color, and the inflatable layer that fits inside. This inner layer will rapidly inflate with air once the air pulse generator is turned on. The vest will gently compress and release the chest wall which will loosen up any extra mucus that might be stuck in the bronchial walls. As mobilization increases from the shaking of the vest, Kaelyn can easily cough up anything that might be making breathing difficult and keep her airways clear. Keeping the extra mucus away from her lungs and out of her airways helps reduce the chance of infections, and ultimately less infections result in better overall health and hopefully staying out of the hospital to be treated for sicknesses.
So far, Kaelyn's been sick twice now since she started school/daycare. Right now she's currently had a strong cough and cold for over a week and even broke out in hives last week. I knew from the very beginning of her first exposure to daycare this year (as we all know too well to be the home of excessive germs) that she would probably encounter more sicknesses this year than she has her entire life. We can only hope that with our care and the amazing treatments that are available to those with CF that we can keep her as healthy as possible. :)
Kaelyn is required to get airway clearance treatments from her vest twice per day for 20 minutes each. Last night was her first official treatment and she did surprisingly well. She got through the first 15 minutes smiling, laughing and talking to us as we joked about her funny voice as the vest was shaking and doing it's work. The last 5 minutes brought tears as the intensity increased, as well as the noise from the generator. Every 3-4 minutes the intensity will increase until the full 20 minute session has been completed. She got through it though, and I have a good feeling that once she gets used to her new vest and what it does, that she'll do just fine with treatments! She's a tough little girl but it's just hard for a 3 year old to understand why she's even subjected to wearing a "shaky vest" (as she calls it!) in the first place....
"BREATHE EASY"
No comments:
Post a Comment