When our daughter, Annie, was diagnosed with cystic fibrosis as a newborn, my husband and I threw ourselves into learning as much as we could about high-calorie formulas, enzymes, vitamins and chest physical therapy, or CPT. CPT is a treatment that uses a handheld cup to pat on the chest, sides and back in an effort to loosen mucus in the lungs. I am sure that during those challenging first months, someone mentioned the vest (high-frequency chest wall oscillation), but in my very overwhelmed state it's hard to recall if I even brushed my hair in the morning.
During Annie's transition from crawler to walker, CPT became increasingly difficult. Her wiggling, grabbing, flipping over and, eventually, running away made it almost impossible to perform CPT effectively. That's when the lightbulb went on and I remembered the vest. At our next clinic visit, we asked about it. Much to our relief, Annie's doctor told us it was time and she was measured for her new vest (we even got to choose the color, purple).
When the vest arrived at our home, I reviewed the materials and scheduled time for a company representative to teach me Vest 101. When the day came, I wasn't sure how Annie would react. To be honest, I wasn't sure how I would react. It's a lot to take in. Our rep was incredibly patient as we went through the steps until Annie's turn came. I sat her on my lap while we adjusted the fit. She seemed so little, and when the rep admitted this was the smallest vest she'd ever fit, I wasn't sure what to say. The rep followed with quick reassurance, “Most families I've worked with struggle with the transition to a vest. It's a good move and I know you'll be happy with it.” Again, I didn't know quite what to say as I'd questioned the most major decisions I'd ever made. All I could do is dive in with my daughter on my lap looking up at me as if to say, “What is this thing?” We connected the hoses from the compressor to her vest and I pushed the “on” button to start our session.
Houston, we have lift off.
Initially, Annie wasn't sure. The noise, the new sensation and having to sit still on Mommy's lap left her uncertain. To distract her, I patted her mouth with my hand while we sang to make funny sounds in time with the vibration. Soon, she started to giggle. The rep adjusted the settings and, like magic, Annie settled down. She wanted to do something with her hands so we sang and did finger play, and I let her “color” on the iPad. Twenty minutes went by fairly quickly and before I knew it, we were done. We clapped and cheered and celebrated when she was done. It was a victory and such a relief to know that she would be receiving the therapy she needed.
Our honeymoon period with the vest ended fairly quickly, and over the next few months, we learned a thing or two. A wiggly child and a vibrating vest bouncing off Mommy's chest do not work for obvious reasons. We resorted to using Annie's high chair, which has a tray that sits securely on a large dining room chair. Annie is much more comfortable and can enjoy playing with her toys on the tray during her treatment. We also reserve TV watching for vest time. Some of her favorites are Baby Einstein, Elmo and Thomas the Train. They captivate her and make the treatment go by faster.
Encouragement from family has been key to incorporating the vest into Annie's new routine.
Her big brother has been wonderful, sitting with Annie during her treatment and even wearing a pretend mask while she is doing her nebulizer. With her hero nearby, she is much more relaxed and willing to tolerate her treatment. Also, hugs, cheers and high fives make her feel proud when she's finished a treatment. This is a family affair.
Starting early with the vest has worked extremely well for Annie. Just like with the initial enzymes, vitamins and CPT, we have developed a routine. This is our new normal and we're taking it one day at a time.