My Daughter’s Extended PICU Stay Brought Up Difficult Emotions

A teen with Rett syndrome faces both pneumonia and COVID-19

Jackie Babiarz avatar

by Jackie Babiarz |

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As a rare disease family, we live in extreme peaks and valleys. The swings are swift, intense, and dramatic.

Last month, my husband and I spent a weekend celebrating my 43rd birthday with loved ones in Las Vegas. My in-laws watched our daughters so we could get away.

My birthday on Saturday was fantastic, but a few hours into Sunday, we received a call that Cammy, our 13-year-old with Rett syndrome, was in the pediatric intensive care unit. It was a gut punch — a monstrous swing from high to low.

It broke me that my daughter has to go through this. It broke me that we weren’t there. It broke me that my in-laws had to deal with the stress. It broke me that this is our reality.

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A difficult hospitalization

Cammy was being treated for pneumonia, but she also tested positive for COVID-19. This was the first time she’d had it. While we’ve been frequent flyers in the PICU for pneumonia, COVID-19 was a curveball. No one had any idea what kind of short- or long-term effects it would have on her. Thankfully, Cammy was in good hands with the incredible team of nurses, doctors, and respiratory therapists at Northwestern Medicine Central Dupage Hospital in Winfield, Illinois.

My husband and I were unable to get an earlier flight to be with her on Sunday, but we are so fortunate to have a large, supportive family who will drop everything to be there for us. One of my sisters relieved my father-in-law and stayed overnight with Cammy in the hospital until we could get there on Monday. More family members filled in the gaps to be with her or our younger daughter, Ryan, throughout Cammy’s hospital stay.

Cammy was hooked up to a BiPAP machine to help with her breathing as soon as she got to the ER. She spent a couple days on BiPAP before she was strong enough to graduate to high-flow oxygen therapy. Before Cammy could be discharged, she had to breathe unassisted overnight. We knew it wouldn’t be a short stay since Cammy was struggling to breathe on her own.

It is heartbreaking to see your child hurting. This time was more difficult than previous hospitalizations. Cammy was working so hard to survive, and there was nothing we could do except be there with her, tell her how strong she is, and remind her how much we love her.

After nine long days in the PICU, Cammy was discharged. Upon getting home from the hospital, Ryan ran to her with tears of joy in her eyes. That night, Ryan snuck into Cammy’s room to lie with her in bed, even though Cammy was already asleep.

We were all reminded that Cammy is living on borrowed time.

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.


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