Session Twenty-Six: Making the Crooked Places Straight, Part Seven
Despite the restrictive cast around her torso and the difficult bathing situation, time was flying right along on our scoliosis journey. Our daughter was enjoying first grade and before we knew it, November was already upon us. It was time to Travel with Our Trachie back to our beloved hospital which specializes in complex medical care. We looked forward to staying at the Ronald McDonald House every visit, knowing that we would encounter other families on similar journeys. We’ve met some truly amazing people!
In addition, our campomelic dysplasia community is very small, yet many of them travel from all over the country to seek out these same specialists who we are entrusting with our daughter’s medical decisions. That, in itself, is very reassuring for us as parents.
Even though we knew we had our girl in front of the right doctors, we still faced some incredible challenges. When our daughter’s cast was cut off in the orthopedic clinic, her skin showed signs of breakdown. In addition to bruising along her hip bones, she had a fungal rash. It was so hard to see. Yet, even more alarming was the noticeable difference in her chest. The cast was having a negative impact on her ribcage. With so many medical challenges, our daughter’s care needed to be balanced. We couldn’t forego her respiratory health in an effort to correct her spine. Yet her deteriorating spinal condition ultimately affects her respiratory health as well. We were truly were between a rock and a hard place.
The casting procedure this time around went very well. Our daughter seemed more comfortable in this new cast. Maybe she was just getting used to wearing them or maybe this particular cast wasn’t as tight around her hips. Whatever the reason, we were grateful. After the last cast, our girl struggled with sitting up for quite some time, and she even struggled to walk for several days. Life in this cast seemed to be going well, but a month into the process our daughter contracted another respiratory virus. We battled through for a couple of hard days, but we made it through with the cast on. It was such a relief! Then two days later, our daughter spiked a 105° fever. We weren’t taking any chances, so we rushed to the ER, where an entire battalion of medical personnel filled the room, working frantically to stabilize her daughter. I gave them the go ahead to cut the cast off if necessary to resolve the respiratory distress, but thankfully, the cast remained.
Our daughter was admitted for observation, and we later learned that she was battling a bacterial infection. It is not uncommon for her to have overgrowth of the colonized bacteria in her trachea after a viral infection. When that happens, the sickness puts up a tough battle requiring antibiotics to knock it back down. As our trach kiddo has gotten stronger, we can typically treat viral infections at home with oxygen support and plenty of nebulizer breathing treatments as we wait it out. But bacterial infections require a different plan of action. Every day is an adventure in our house! We never know what’s in store.
It wasn’t long after the antibiotic regimen began that our girl was back to her typical self and we were truly grateful that the cast lasted through the battle so we could continue our scoliosis correction… our journey through Making the Crooked Places Straight!
Stay tuned because the journey is about to turn the page to a new chapter…
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