Charlotte's Journey Home

Just a Regular Kid, Sort Of

Update 2 Day Post-Repair (#CHDAware)

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mended heart

Current status: Charlotte has been asleep for the past 2.2 hours. As far as I know, this is the most continuous sleep she has had since her surgery. I can say that for the first time since Wednesday, she appears to be sleeping comfortably. She woke briefly, gave me a wan smile (her first really real smile) and said she was going to keep sleeping. My fingers are crossed that we’re turning a corner.

Medical update: Yesterday one peripheral IV (PIV) and the arterial line were removed. We would have removed the second PIV, but Charlotte screamed bloody murder, as my mother would say, and what should have been a 5 -minute process took more than 30. We decided to stop torturing the scared, angry darling (and, frankly, the nurses).

She continues to complain of back pain. This could be caused by being on a metal operating table for 5 hours, having her ribs spread wide, and/or lying in bed. We’re hoping to get her off the Dilaudid today. That should improve her mood as that med is known for turning delightful people into crabs.

Chest tubes will come out tomorrow, most likely. We’re working with the CCU and pain teams on a plan to diminish her anxiety with medication to avoid another dramatic scene and prevent her from injuring herself.

Milestones: After the removal of the Foley catheter, we’ve gotten C out of bed three times to use the toilet. Today instead of the toilet chair next to her bed, we had her walk across the room to the bathroom. Then we had her sit in a chair to eat her breakfast and watch a movie. She brushed her teeth and I brushed her hair. And we exchanged the hospital gown for a snap-backed t-shirt. (Get this for ingenuity–they use the toddler/baby hospital gowns as t-shirts for the older kids.)

She wants to be in control and hates that she is not. And she hates being the center of attention of the “flock of docs” when they come by. She wants to go home. So…I’ve told her that she alone is in control of when she goes home. She has to walk, she has to be sit, she has to improve her lung function. We cannot do those things for her nor can the nurses. I’ve also told her that while we know she is scared and angry, she has to be polite to her caretakers. That is who she is and I would hate for her to add remorse to her emotions when she realizes how truly wicked the meds make her. So far, I’ve gotten her to walk about 20 steps (she practically raced back to her bed), and she’s gotten herself to say please and thank you. I think that’s huge.

Today’s goal is simple–get up and walk. Ultimately, Dr. Jate believes she may go home on Sunday if we can get her to walk and use her lungs.

No pictures–she doesn’t want me to take any right now.

Still on StayCation

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Author: Culture Bean

I am a mother, a pre-published children's author, and a published academic. I am also a "mommy blogger," though I hate the term. My passions are reading and writing. As a professor, I strive to help my students think critically about the media and culture with which they engage. I've started this blog because it's time I put my money where my mouth is!

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