Visiting the ER with any child is stressful. Visiting the ER with a neuromuscular patient is unnerving. I drove past three hospitals to get to one that could cope with my son. I knew that most hospitals could not manage his care. However, I also took the bold move to drive past two specialty pediatric hospitals. Before, when we had only a trisomy diagnosis, I would not have made that call. I am rather fond of one of the ones I drove past about half way into my drive. This was my son's first lung related event, and I didn't want to take chances. If he needed admission, then the pulmonologist who specializes in the neuromuscular children is only at one hospital. Even if we didn't, sitting in the ER would induce anxiety in me. Could they manage him? Did they even understand the risks of their routine treatment in neuromuscular patients? It isn't the disease itself that is so scary. It is the unusual reactions to routine ER procedures for neuromuscular patients. Things they do all day and are comfortable with are the very things we have to avoid. Those rare once-in-a-career reactions that a particular nurse or doctor might see are the very things we expect any time we go.
I didn't have to explain to the ER doctor who our specialists were. He called the supervising doctor over to assist. One nurse, however, didn't immediately recognize the names of the specialists. She mistakenly thought I was referring to the pediatrician. Perhaps she thought my son saw the pulmonologist as an asthma patient (we were in the asthma treatment room.) I paused to consider how easy a slip up can be - just one wrong step can result in catastrophe.
Fortunately, Melchior is going to be fine. We made the right call with his cough and breathing complications. He received the medicine he needed, and didn't get one contraindicated. We now have experience for the next time, when it may not be quite so smooth or easy.
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