After more than a month in the hospital, we’re expressing thanks

With a discharge imminent, we're grateful for staff — and Cammy's strength

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by Jackie Babiarz |

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I never imagined we’d be in the hospital for a second consecutive holiday, but we were. Our oldest daughter, Cammy, was admitted to the pediatric intensive care unit the day before Halloween. Now we’ve spent Thanksgiving in the hospital, too.

But despite being here for a month, we have a lot to be grateful for.

A child lies in bed with a plastic mask over her face and a stuffed monkey at her side. The child is in a gray T-shirt, and her hair is tied up in a bun.

Cammy in the hospital, where she’s been in the pediatric intensive care unit for more than a month. (Photo by Jackie Babiarz)

This period has been the most difficult time in our lives since Cammy was diagnosed with Rett syndrome 12 years ago. A few weeks ago, we were meeting with her social worker and care team and thought we were going to lose her. Now we’re anticipating her discharge within a week. We’re eternally in awe of Cammy’s perseverance and strength.

We’re grateful for our enormous support system, which has helped us through this roller coaster. Our refrigerator at home has been stocked for the past four weeks. Friends and family have made sure our younger daughter, Ryan, has transportation to and from her activities, and cousins have occupied and entertained her.

Our gratitude

Now that Cammy’s been in the pediatric intensive care unit for more than four weeks, we understand on a much deeper level what nurses do, and it’s way beyond their job description. They make sure we understand exactly what they’re doing, the plan for Cammy’s day, and the goals that have been set. On top of checking Cammy’s vitals, adjusting her oxygen levels, feeding her, changing her, bathing her, and inserting her urinary catheters, they care for the family as well, and just as much. Staff members frequently ask how they can help us.

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We’re grateful to those who’ve spread kindness through their meals for the staff and gifts for other children spending extended time in the hospital. We’ve created an Amazon wish list for anyone else who wants to help those in our pediatric unit, but doesn’t know how.

Many families, like ours, spend more time in a hospital than anyone should have to in a lifetime. We want to continue showing our gratitude and support by helping stock the pediatrics floor with holiday gifts, as well as items the staff needs. All donations will lift our spirits.

Last but certainly not least, we’re grateful for our family. Each of us has attributes that keep us together, connected, and afloat. We know we’re on borrowed time with Cammy, given her Rett syndrome, so we appreciate every minute we have together.

Cammy has a long way to go to get back to her baseline. Nonetheless, our family of four is anxiously waiting to be under the same roof again when she’s ready to go home.

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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