Mylo Jae’s AVM Surgery & Recovery

As a parent, we never want to see our children suffer. Unfortunately, our journey started just like that. Mylo started with an onset of headache and vomiting, which easily looked like a stomach bug or migraine. Little did we know, it was so much more. 

By the second day, seizures started, 911 was called , and the situation became dire. We went to the ER at Levine’s Children’s Hospital in Charlotte expecting IV fluids and maybe some migraine management medication.  After several seizures-like episodes in the ER, the Drs. ordered their first of many CAT Scans.
The next few moments were followed by a rush of doctors and the words, Mylo has a brain bleed. There was a massive amount of blood on her brain which was causing all of the symptoms. This took us some time to process and understand, but we knew that no matter what, this could not have a good outcome. Within the hour we were transferred to the Pediatric ICU, talking to the Neurosurgery Team and Neurologists, while looking over her shocking CAT Scan. We were told that she had a very rare condition called an Arterio Venous Malformation or AVM, and surgery was eminent.
We spent the next 5 days waiting for the brain to calm down for a successful surgery to remove the AVM, but the symptoms were anything but calm. Mylo had excruciating pain and pressure that was not relieved by high doses of medication and several seizures lasting 3-11 minutes followed. The countdown to surgery was the most difficult time of our lives as we began taking it hour-by-hour.
On 3/25 Surgery day came and our Neurosurgery Team was ready to proceed with removing the AVM, blood clots, and stopping any and all bleeding. Things went very well and an angiogram was scheduled to be sure there were no more bleeds. But as we learned that this rare condition only effects 1% of the population, those were the same risks that the angiogram would discover more bleeding. Chances as they were, there was an additional bleed. The Neurosurgeons had to go back in, perform an additional procedure and repeat with another angiogram. Two surgeries, two angiograms and a CAT scan later, all was well. 

Mylo was taken off of sedation the following morning and as she woke we knew there were still many risks we would face but we were so ready for the recovery part of this journey. 
Since then Mylo has made incredible leaps and bounds. Her determination and strength has constantly kept us in awe. At three days post op she is walking, talking and getting back to her usual self. We still have some work to do with out-patient physical and occupational therapy, follow-up appointments, medication, tests, and scans, but she is well on her way.
Now that the worries of getting our daughter well and seeing her live the life she was meant to lead is stable, the realty set in to the vast medical bills we will now face and will face in the coming years. 
We know this journey would not have been possible without the incredible doctors, nurses and staff at Levine’s Children’s Hospital. A portion of money raised will be  donated to Levine’s Children’s Hospital to help other families to best help their little ones.