Kaylee's Brain Hemorrhage

We arrived at the University of Iowa Stead Family Children's Hospital via ambulance. Kaylee began joking around lightheartedly and said "I'm sorry mom for the corny jokes, but I'm trying not to think about the other stuff." She was precious and amazed those around her. 

Upon arriving at the UIHC, they ordered a MRI and MRA. My mom, Becki, Sam and Stacie met us at the hospital and sat with us as we waited for results. The MRI/MRA confirmed the intraventricular hemorrhage involved a portion of the posterior cerebral artery. An angiogram was ordered to figure out what caused the brain hemorrhage, which was necessary, so they would know how to treat it. 

The angiogram was very emotional. She had to be intubated and put to sleep for the procedure, so I had to sign lots of papers alerting me to the risks, which were very scary. It was also the first time they wouldn't let me stay with Kaylee. She started crying as soon as we were separated and then I lost it. 

In the meantime, Trevor made it from Toulouse to London, but then missed his connecting flight in London to Chicago by minutes. He was devastated. However, since he wasn't on a flight we were able to talk to each other and cry together during her procedure. It ended up being a blessing in disguise. 

The angiogram revealed the cause of her brain hemorrhage to be an arteriovenous malformation or AVM. An AVM is where an artery meets up directly with a vein, instead of the normal blood flow pathway being an artery to an arteriole to capillaries to a venule to a vein. The pressure between the artery and vein was too great causing it to rupture. Thankfully hers is small 5 mm x 5 mm and is located in an optimal location near the L ventricle vs inside the brain. The latter is important as she is neurologically intact meaning she can move her arms and legs equally and has no brain damage outside the ventricle. Her main symptoms are a terrible headache, neck pain and nausea vs a seizure which is the other way an AVM presents. 

We learned that AVMs are congenital, so she was born with it, but thankfully they aren't genetic, so the other kids aren't at risk. They are very rare. They only rupture 3% of the time. Unfortunately, now that it has ruptured there is a 15-65% chance it will rupture again in the first year and after that it returns to a 3% chance without treatment. So now they need to figure out the best way to treat her AVM.