Session Twenty-Three: Making the Crooked Places Straight, Part Four

Session Twenty-Three: Making the Crooked Places Straight, Part Four

We had just Traveled 1,100 miles with our Trachie to have a plaster cast fitted on her torso for scoliosis treatment. Now that we were home, it was time to resume life. However, there were some serious adaptations that would need to be made. First and foremost was keeping our girl clean. Her cast was not waterproof, which meant no more baths. I don’t recall where I saw it but allow me to share an incredibly handy tip we came across for those on similar journeys. We cut the top off a pair of pantyhose and dipped the remaining stocking in some rubbing alcohol, then pushed it down under the cast, through the opening over her stomach and under the cast at her pelvis. Then we “flossed” her entire back and sides by working the pantyhose around the entire cast. She would ask to be “flossed” frequently.

We were making the best of our challenging situation, but it was difficult to see how uncomfortable she was. The hardest was when she would ask for the cast to be taken off. Oh, how my heart would ache.

Yet, for the most part, our girl endured the new challenge in true warrior fashion, and with a big smile on her face. Just two weeks after getting the cast, it was time for our girl to start kindergarten. Going from preschool’s three-hour school day to a seven-hour day was going to be a big change. Since we knew she would be adjusting to life in a cast, we had her IEP (Individualized Education Program) specify that she could work her way up to attending school all day. We should have known our miracle girl would find a way to adjust… she didn’t need a modified school day. However, she did take breaks to lay down and rest since sitting up was quite uncomfortable for her. No matter how much padding and moleskin we put on the bottom of the cast, it still dug into her hips.

Mayah had a wonderful party with family to celebrate her sixth birthday and then the following day she began to show signs of a respiratory sickness. Even a common cold is tough on a ventilator-dependent child’s fragile lungs. However, we would soon discover that our daughter was battling a heavy hitter in the viral world, one that had put her in the PICU on multiple occasions. Our daughter had contracted RSV.

When she woke up sick, we instinctively knew from past experiences that we needed to get a viral swab done at the local lab so we could see what we were dealing with. Our girl had a fever, was very lethargic, and was requiring increased suctioning down her trach. It wasn’t long after returning from the lab when we began considering loading her up to head to the Children’s hospital ER about sixty miles away. With the cast cut out over her stomach, we could see our daughter’s chest was pulling in heavily (retracting) at the base of her sternum. She was really struggling to breathe and was in the early stages of respiratory distress. We immediately began the routine of administering breathing treatments through the nebulizer, but her condition continued to worsen. We had a decision to make. It was a safe assumption that if we took her to the ER that they would cut the cast off her chest to allow her breathing to improve, so we decided to cut if off ourselves. The idea was sound, but we didn’t have the proper tools, so it wasn’t the smoothest operation, but it was successful. The retracting corrected almost immediately after the cast was removed. The scoliosis treatment was going to have to take a backseat to the respiratory illness. So, our girl got an unexpected reprieve from wearing the turtle shell around her torso just six weeks into the three-month cast.

Since the appointment for the second casting was already scheduled, we just kept the date as-is and our daughter was able to enjoy most of the autumn season without the cast. Our girl was very excited to be able to take baths again and her Halloween costume fit a whole lot better without that pesky cast underneath. She was the cutest little Bo Peep we had ever seen!

Not exactly a stellar start to scoliosis treatment, but when is anything easy in the life of a medically fragile child? We take every day as it comes! Thanks for coming along for the ride, we’re excited to share our scoliosis journey with you.