Our Daughter Goes From Zero to 60 in a Flash

Jackie Babiarz avatar

by Jackie Babiarz |

Share this article:

Share article via email
Rett Syndrome News | main graphic for column titled

Things escalate quickly in our house. What we thought would be another typical day last Friday turned into us calling 911 and admitting our 12-year-old daughter, Cammy, to the hospital.

I kept Cammy home from school that day because someone in her class tested positive for COVID-19 again. Cammy is immunocompromised because she has Rett syndrome, so we need to be cautious and vigilant. I thought we would just snuggle and call it a day of rest for both of us.

But her breathing was irregular in the morning, which isn’t uncommon — we have oxygen and a nebulizer to correct it. After her second time tube feeding that day, I repositioned her. Immediately, her respiration changed to short and shallow breaths. I quickly gave her oxygen, but she still wasn’t catching her breath.

I called my husband, Billy, who was upstairs working, to assess her. As soon as I asked him if we should call 911, he nodded and held Cammy’s clammy, sweaty hands, listened to her shallow breathing, and watched her heart beat like it was going to pop out of her chest. Five minutes later, I carried my Cammy out to an ambulance, where the drivers sadly know our family too well. I rode with her for the third time in a few years. Billy drove behind us.

When the nurses stabilized Cammy in the ER and Billy entered the room, I excused myself to go to the bathroom to break down and collect myself again. It is amazing how the fight-or-flight response takes over for as long as it needs to, then the stress settles in when you are able to process the reality of a situation.

Recommended Reading
irregular breathing

Grant Will Fund Study of Breathing Difficulties

That’s when the PTSD crashed into me. In 2018, I walked into my mom’s apartment to find her collapsed on the ground. I rode in the ambulance with her as she gasped for air. I sat by her side for five days in hospice, listening to the oxygen machine flowing and watching her vitals slow down, until she finally let go. These visions and sounds come crashing back more often than they should when I am in a familiar crisis with my daughter, again.

When we were admitted to the pediatric intensive care unit, Cammy was negative for COVID-19, respiratory syncytial virus, and every other virus they tested her for. She fell asleep once the ventilator was on and her little body didn’t have to work so intensely to open up her lungs. When she woke, she smiled at me, probably knowing just how much I needed that reassurance.

911 | Rett Syndrome News | Cammy lies in a hospital bed hooked up to a BiPAP machine and holding a Curious George stuffed animal

Cammy rests with respiratory assistance in the hospital on Jan. 29. (Photo by Jacqueline Babiarz)

These days, I don’t even ask when Cammy might be discharged. I know she will gain her strength and bounce back in due time. As usual, we’ll be patient and follow her lead.

While Cammy remains a medical mystery to us and most physicians, we understand her body. Cammy goes from OK to 911 in a flash.


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.

Comments

Leave a comment

Fill in the required fields to post. Your email address will not be published.