A simple cold leads to a terrifying trip to the ER for our daughter

On Oct. 29, Cammy, our 14-year-old daughter with Rett syndrome, went to bed with a cold. She was fatigued, had glassy eyes and mucus in her chest, and was coughing a little. We checked on her a few times during the night, but by 5 a.m., we knew we had to head to the emergency room.

Cammy entered the ER on oxygen, but her breathing was extremely shallow and she couldn’t keep her eyes open. She was nonrespondent. We thought we’d lose her.

The medical team quickly got Cammy into a room and hooked up a BiPAP machine to expand her lungs. The room got smaller and smaller as eight ER staff members filed in. More equipment was brought in, and I was pinned in the corner, helpless.

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The beeping machines and adults hovering over her triggered my post-traumatic stress disorder, so I covered my eyes with my fingers and plugged my ears. I felt a hand on my shoulder and opened my eyes to see tears flowing down my husband’s face. For a second, I thought we’d lost her. Only three medical workers were in the room now, and Cammy was slightly alert and fighting back.

After several days on the BiPAP machine and with rest, IVs, antibiotics, respiratory therapy, and suctioning to remove the mucus from her chest, we thought Cammy was turning a corner. But on day six, out of nowhere, she stopped breathing.

Another setback, then hope

Again, the room filled with medical workers to revive and stabilize our girl. The doctor had no idea why she had stopped breathing for a short while. It could have been a mucus plug or something with the virus. For the second time during this hospital stint, we thought we had lost our daughter.

This led to a very difficult, closed-door conversation between my husband, the doctor, a nurse, a social worker, and me. Because of Cammy’s complex scoliosis and decreased lung function, the doctor laid out all the options should it happen again. Decisions about intubation, a tracheostomy, and a do not resuscitate directive are ones that no parent should have to make for their child. As awful as it was to put things into writing, I felt lighter knowing that even though we might not need those decisions now, they are in place if the time comes.

For the next 24 hours, my husband and I didn’t leave Cammy’s side. We shed many tears. We pleaded and bargained to do anything for her to be OK.

Eventually, Cammy became more stable and alert again. We grew confident that she would pull through this. Her eyes were telling us that she still had more fight in her.

Cammy has been in the pediatric intensive care unit for over two weeks now. We have no idea how long it will take for our daughter to go home. We know that she is driving the bus. She is the patient, and we have no choice but to be patient.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.