Lili's Recovery

On June 15, 2018 while Lili was getting ready for bed, she suddenly began screaming in pain, throwing up, seizing, went limp and unresponsive, and was struggling to breath on the way to the Lamesa ER. A CT scan showed multiple areas of brain bleeding that needed immediate and critical action. She was intubated and airlifted to Covenant Women and Children’s Hospital in Lubbock. Her neurosurgeon determined Lili had a Arteriovenous Malformation (AVM*) in her brain which hemorrhaged (massive brain bleed), causing a very large clot to form on her frontal lobe. Over the next 24 hours, she underwent three brain surgeries that eventually saved her life. The neurological team was able to place an emergency drain in her head to remove most of the pressure from her brain, clamp the vessel and reduce blood flow, remove the AVM, intraparenchymal hematoma, and intraventricular clot with minimal bleeding, and place two new drains. We spent most of the evening praying that Lili would make it out of the surgeries, as we were told each surgery was extremely risky, but necessary to save her life. We were told at the end of the evening that not only did our little Wonder Woman make it through each surgery, but they all went better than expected and she was expected to recover, with time! 

Over the next 14 days in the pediatric ICU, Lili fought hard to recover from a major brain hemorrhage and three brain surgeries. Our little miracle baby made improvements every day. Even when she would have set backs from multiple seizures, aversions to medications, or sedations for her multiple procedures, she fought hard to come back to us. After a few days, she was extubated and her therapy was able to begin. She started speech, physical, and occupational therapy to gain strength in walking, talking, eating, holding her head up, writing her name, hand/eye coordination, and so much more. 

After progressing every day for 14 days and having an MRI show that the AVM is gone (thank you, Lord!), it was determined that Lili could finally be discharged from the ICU to an outpatient rehabilitation facility where she can continue getting stronger and learning everything she knew before.  Our Lili girl truly is a Wonder Woman and coming back to us!! 

Now that Lili is on the road to recovery, her family is seeking assistance for the financial burden that has been left. Nancy and Rachel have made some unbelievable sacrifices to be by Lili’s side and aid in her recovery. They will both be out of work for a total of five weeks and the medical bills for her care will be enormous. It is all so worth it to have our Lili Bug here with us! But we’re hoping to help get them back on their feet. Below is a breakdown of *some* of the medical care Lil has received so far with estimated costs. They do have BCBs insurance, but even after meeting their deductible and out of pocket expenses, many of these procedures are out of network and they will be responsible for 30-70% of each cost. Your love and generosity is so appreciated! And more than anything please keep Nancy, Rachel, Ari, Ariel, Jessie, and sweet Lili in your prayers! 




MRI: $2,611 x 3 (plus 2 in the future) 

CT scan: $1,200 x 3

Angiogram: $16,200 x 2 

Life flight: $55,000

Ambulance ride: $2,700 x 2 

Intubated: $11,000 for 4 days 

Pediatric ICU stay: $10,000/day for 14 days

Emergency intracranial drain: $50,000

Endovascular treatment of brain aneurysm and Embolization of the malformation: $96,120 

Brain surgery to remove the AVM, intraparenchymal hematoma, and intraventricular clot, and place two new drains: $150,000 

Outpatient Rehab for occupational, physical, and speech: $2,000/day for 21 days 

Continued therapy 3x/week and seizure meds 3x/day: unknown costs for 1 year

Financial strain of being away from home/work for 5 weeks 



*A brain arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain. The arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process and can be life threatening. This was a birth defect Lili was born with; there were no signs and it could not have been prevented.