My daughter was 10 yrs old when her brain AVM/rupture occurred. The end of this month marks her one year anniversary. On Nov. 29 2014, she woke up “not feeling well.”
I thought maybe it was a stomach virus at first. She had a history of headaches, vision problems (she wore glasses for), and falling behind in reading and math at school. The school thought maybe it was a learning disability.
So gradual changes over past few years, but it all came to a head that morning when we were going to run errands. As we got down the street in car she started throwing up, then screaming saying it hurts, the back of her head hurt like a knife digging. A voice told me–GO TO THE HOSPITAL, so drove there. She walked in with me holding onto her (at this point we didn’t know what was going on or how serious it was), and we waited some time they were busy before being seen.
She fell asleep/passed out, and then woke up screaming, which got the doctor’s attention. He ordered a CT scan, which revealed the bleed, and called for life lion helicopter. She was screaming and the whole ER heard her cries. I tried to comfort her through the scariest moment of our lives, telling her that we will take her by helicopter to Hershey, PA Hershey’s children’ s hospital.
They put various drains and catheters in, all in attempts to relieve the ICP brain pressure in her head. Nothing was working. She was in a induced coma for 2 and a half weeks, and on a breathing ventilator for 4 weeks in the ICU. Step down one week, then on to impatient rehab for 6 weeks. It was on the helicopter ride that she now tells us she went to Heaven and got to see Jesus and her 2 older sisters that I never met, who I miscarriged before she was born. I didn’t even know what they were. When she told us I was happy.
She had to get 8 surgeries total on her brain, with drains, catheters, 2 them being craniotomies, where they removed 1/2 of her skull to relieve the pressure inside of your head. She also had a shunt put in to get the fluid away. They put the bone flap back in, but it got infected days later, and had to have surgery to remove it again. Now she has a prosthetic bone flap in her head.
She wears an AFo on her right leg & an arm splint due to tone from the stroke, her right side was paralyzed. She still has a feeding tube. She had to relearn to swallow, sit up, walk, talk again, and even use the potty. It was like bringing an infant home from rehab, she drooled on her self, had a suction machine, and you feed her through tube in her stomach, change her. She was in a wheelchair, and completely mute. When we left rehab, she wasn’t even able to nod yes or no or raise a hand for yes or no.
We threw many many prayers & faith in God , he has touched her. Her AVM is healed, although she still has some deficits, everyone can’t believe what she is doing since that day. She can talk in complete sentences, she is eating some, she is walking short distances with a cane, when she couldn’t even move her leg at all in the hospital. She couldn’t even sit up on her own at first.
She can now write her name, even a sentence, and can read at a 2nd grade level. When we left rehab, she was putting pencils in her mouth and she couldn’t see well enough to focus on you. Now she doesn’t even need glasses; she has come so far.
We got our baby girl back, and she’s a fighter. Praise the Lord for his blessings, and never give up hope. Amen.