A Stroke Survivor Story: 4 years of recovery скачать в хорошем качестве

A Stroke Survivor Story: 4 years of recovery

A look back at 4 years of recovery following an Arteriovenous Malformation (AVM) hemorrhage and stroke. ABOUT SOPHIA Sophia was born on November 28, 2011. She was a completely healthy and normal baby with no trouble early in life-not even an ear infection. As a five-year-old she loved rainbows, unicorns, ballet and anything that glittered or sparkled. On November 4th, 2017 she went to bed with a headache but otherwise had no symptoms, but around 2am on November 5th, she woke up inconsolable with a severe headache and left arm weakness. By the time we had reached the ER she was unresponsive and the CT scan revealed a brain bleed in the right hemisphere of her brain. She was placed on a ventilator and transferred to the Children’s Hospital where we would learn about the AVM – arteriovenous malformation- that had ruptured spontaneously. She had been born with this and it was a ticking time bomb in her brain, a hidden nightmare that changed our lives forever. By 6am Sophia was in surgery to remove the blood clot left behind by the hemorrhage and afterward she was admitted to the pediatric intensive care unit of the hospital. The Neurovascular surgeon explained to us that it was dangerous to just remove the AVM because her brain and body were used to the extra turbulent blood flow caused by the AVM. Normally blood flow pressure is controlled by arteries and veins being connected by capillaries, but this AVM was a tangle of arteries and veins directly connected, causing high pressure and turbulent blood flow that was dangerous to just remove without letting the body get used to directing that blood flow elsewhere. She would need multiple angiograms, spaced throughout the next two weeks to slowly and carefully cut off blood flow to the AVM before removing it altogether. So, we prepared for this news as best we could and watched our baby girl on life support, thankful she was alive and that the doctors were hopeful for her recovery. On November 7th, though, at around 2 in the morning, she began to have vital sign changes and heart rhythm changes. At first they thought her sedation was turned up too high, but when turning it down didn’t work they sent her to CT scan to check her brain. The Neurovascular surgeon was on-call that morning and gave us the awful news. Sophia had had a devastating stroke and the only way to keep another one from happening was to immediately take out the AVM instead of the previous plan. The surgeon told us that if she survived the surgery without hemorrhaging to death she would be placed in a complete medically induced coma and have a portion of her skull removed and frozen for safe-keeping to allow her brain some room to swell. The initial bleed and surgery, the several angiograms she’d had and the upcoming surgery to remove the AVM was an onslaught of heavy magnitude on her delicate brain and they had no way to know how much it would swell and if it would crush her brain stem and kill her. The only thing I can say about the following two weeks was that it was a 24/7 nightmare. We watched and waited not knowing from hour to hour if our baby girl would live or die. I wouldn’t wish that kind of torture on my worst enemy. But God was with us through every second and the love and support of family, friends and strangers helped us find the courage we needed to vigilantly watch over our daughter. Sophia miraculously survived the surgery and the swelling and began to get better. They brought her out of the coma and took her off the ventilator to breathe on her own, but when she woke up it wasn’t the joyful reunion we had dreamt about. Sophia was confused, tons of heavy narcotic medication swirling through her body and her brain still so swollen that she couldn’t speak or recognize any of us and spent much of the day either sleeping or trying to hit and scratch herself and others. I was completely shocked to find out that surviving the AVM was only part of Sophia’s battle. One month after entering the Children’s Hospital Sophia was stable enough to transfer to an inpatient rehab facility near our home, the Children’s Center Rehabilitation Hospital. When we arrived there she could only say a couple of words and move her right arm and leg. She couldn’t sit up, eat, or do anything for herself at all. She was still confused but did recognize us and had attempted a few smiles in between bouts of confusion. Throughout the next 16 weeks of inpatient rehab she would ever so slowly emerge from her cocoon. We weathered screams, scratching, feeding tube pulling, her repeating the same word or sentence over and over and over again, her inability to relax or sleep, agitation, and unhappiness. She slowly learned to talk again and eat, she talked more and more lucidly while the heavy narcotics were weaned and then finally stopped on Christmas Eve.