On June 8th 2017, just five days after my daughter’s, 14th birthday, she collapsed at volleyball practice and slowly became unconscious. The paramedics were called and Audrey was taken to one of the best head trauma hospitals where they found her brain AVM ruptured. The bleed was so massive they had to do immediate surgery for craniotomy.
The first 24 hours after the craniotomy, she was doing fine. After the 24 hours, her Inter Cranial Pressure (ICP) was elevated to the 20’s. The neurosurgeons and doctors decided to use a central line to administer medicine via IV line to give her brain some rest and to help lower her ICP level. The meds was able to keep her ICP level under control until the 10th hour, that’s when the neurosurgeons decided to perform craniectomy on her to allow her brain to swell and go back to the normal size. When they took her into surgery again, her ICP was as high as 30. Once they removed part of her bone flap, her ICP dropped to 10.
After craniectomy, she was shivering, having fevers, and was still heavily sedated. She didn’t wake up until the day before Father’s Day. On the morning of, she softly whisperer “Happy Father’s Day” to her dad. This made us happy and emotional. When she woke up, she had lost strength and mobility on her left side. I did bed side PT with her and her brother did speech therapy with her. Days came and she regained mobility on her left hand and foot, her speech had gotten better.
They then took her to get an angiogram to make sure there was no residual of the AVM. After the angiogram, the nurses and doctors in Pediatric ICU noticed the pulse on her right leg was weaker than her left leg. So they did a doppler ultrasound and found a blood clot in the angiogram site. And then the nightmare came true for us – they needed to do surgery on her right leg where they angiogram was done to remove the blood clot. Before they could do surgery, they needed to put her on a blood thinner. The neurosurgeons said they couldn’t put her on one however for another three days until her brain was well enough to take it.
After three days, they administered Coumadin via IV before they performed vascular surgery on her. When they went in to perform the vascular surgery, the vascular surgeons saw the radiologist who did her angiogram over clamped her artery causing a tear, so they had to cut a piece of her large vein to patch the torn artery. After the vascular surgery she had to get Coumadin shots in her belly twice a day and blood work in the morning making sure her blood is at a therapeutic level. She had the shots for two weeks before they put her on the pills for six months.
She had to go to an inpatient rehab for PT, OT, and speech and graduated from rehab in two weeks. She was able to walk and talk and was back to her baseline in two weeks. Total weeks spent in the hospital were three weeks and two weeks in rehab.
She finally was able to go home on July 14th, 2017 and has to wear a helmet to protect her head where it’s missing the bone flap. She started school as a freshman in August 2017 under the school’s IEP program. On March 22nd, 2018 she went in for another surgery, which is cranioplasty, to put her bone flap back on that’s made in Sweden. As of today, April 2017, she is back in school.
She is my hero, inspiration, warrior, and my everything. This whole ordeal made us stronger and value life more than ever. I am thankful for every day and blessed she is healing and recovering well.
The Joe Niekro Foundation would like to thank Nancy for sharing her daughter’s amazing story with us and we’re so glad she is recovering well.
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