Maddie’s Pediatrician consulted with a Pulmonologist, and they plotted out a new breathing treatment schedule that will hopefully improve her lung function. The Pulmonologist looked at Maddie’s chest x-ray and asked my favorite question: “Has she been tested for Cystic Fibrosis?” When she was in the NICU, she was tested a couple times for CF. One day, before she was tested the second time, I had three different residents ask me if she’d been tested within 20 minutes of each other. Looking back, their eagerness to “fix” Maddie is appreciated and their lack of communication with each other somewhat comical, but at the time I was freaking out. She had a lot of the signs for CF so it was a distinct possibility. Luckily, all the tests came back negative.
So, back to the Pulmonologist. Maddie’s latest x-ray showed a lot of mucus in her lungs (hence the CF questions). The Pulmonologist suggested Maddie start another breathing treatment to help break up some of that mucus. So now every four hours Maddie will inhale Hypertonic Saline, which the internets tell me is a common treatment for CF patients. It was described to me as a “saltwater mist.” Sounds like an expensive spa treatment to me. I asked the resident who explained it to me if that meant I could take her to the beach more and he laughed. I was serious.
The Hypertonic Solution definitely has started working because Maddie is coughing a LOT. The coughing is so important because that mucus has to get out of there, but they are clearly painful to her. She never has easy coughs, they are always violent and prolonged and rob her of every last breath until she is choking. By the time she is done with a bout, her face is red and she is whimpering with tear-filled eyes. It’s heartbreaking. I just keep telling myself that no matter how painful, the coughs are productive. She won’t remember this time in the hospital, the only people scarred for life will be the adults.
One of her nurses found her a mobile and she loves to stare at the birdies flying over her head. I’m hopeful that Child Life or even Occupational Therapy can also come down and help occupy her mind. It’s such a crucial time and I hate to waste opportunities for her to learn and grow. She’s still sleeping a bit more than usual, but she is quickly growing tired of the silly songs and choreography I make up for her when she’s awake.