Olivia’s no stranger to surgery. Her first pacemaker was installed when she was just a baby. Her fourth surgery for complete heart block took place shortly after we shared the first part of her story.
For many children with congenital heart disease (CHD), follow-ups, repeat surgeries, and self-care through recovery are an important part of staying healthy. But it’s a challenge every time.
Marisa, Olivia’s mom, shares her account of her daughter’s pain, strength, and resilience. In her words:
Well, the story you have documented and captured added another chapter. Olivia had her fourth surgery at UVA Health Children’s.
After being in pre-op quarantine for two weeks, last Friday we arrived at the hospital at 5:30 AM. Olivia’s surgery went remarkably well. Her “Best one yet!” as she put it. 🙂 It was flawless. With no complications, and an incredibly good reaction to the anesthesia, we were home sooner than expected.
Currently, we’re managing her pain and focusing on making her comfortable and getting rest. The pain should subside by Wednesday. Wound care is tricky. She will have a bandage for three weeks, then we will swap out to a different covering for one year. At the same time, her incision must also be kept out of the sun for one year. This is to help the appearance and texture of the scar.
She remains away from sports and school until around November 20th, though she may have visitors during her recovery as long as we take the customary precautions like handwashing. Implants and incisions don’t like infection.
Now home, Olivia is in recovery mode. As one would expect, postoperative pain has set in. Unfortunately, even with medication, the pain is still considerable. Yesterday morning, she said “I’m dying,” when asked about her pain level. Anything core brings pain. Sitting up, laughing, coughing, etc. The oxycodone has brought some relief. Her pain dropped from a 10 – “I’m dying,” to a 5 – “It hurts.“
Last night’s bedtime was tough on my momma heart. It was just us, no need for her to put on her brave face when her sisters are around. Olivia looked sad, defeated, her body failing her. She looked small. With the pain, I can’t hug or hold her. She felt lonely. Though clearly not alone and fully supported by friends and family, Olivia’s in this battle alone. None of us know how she feels physically, mentally, or emotionally.
Follow-up for CHD
Find out more about our congenital heart defect care, which follows children as they transition into adulthood, and helps them thrive.
At the same time, she knows tomorrow will be better. She’s been here before. She has fallen. She has crashed. She has been broken and cried. She has crawled, hurt, and surrendered. And then, she rose again.
I feel both calm and proud, and yes, emotional, when I watch the videos and read the stories you so beautifully put together. Thank you for the thorough and kind approach you take with your work. You’ve helped enlarge our village and the understanding from others in a year when we really need it❤️.
