Trevor finally made it to the hospital at 3 pm. He was full of emotion and jet lag. It was so good to be together again. Kianna and Trace came to the hospital today for the first time. They seem to be doing okay. It's a lot for all of us to process. Kaylee has been a trooper! She was excited to show them her TV screen that control everything: music, movies, lights, video games, etc., Unfortunately her head hurts too badly to sit up, so she has just been lying flat.
Kaylee had a second MRI today to make sure the bleeding has stopped. We waited all day for the results and got conflicting results. One doctor in broken English told us the neurosurgeon told him it was "extended", which sounded to us like it grew. However, the neurologist pulled up the image for us later and the impression seemed to indicate it had "reduced" slightly. Ugh! Which one is it? Being that this is a teaching hospital we constantly have lots of doctors and residents in and out of the room evaluating Kaylee, but they don't seem to communicate or know what the other one has said or done...
Finally, Dr. Buatti, a radiation oncologist, came to talk to us. He said that he, the neurosurgeon and neurologist all met to discuss the best course of treatment for Kaylee. They decided that would be radiation surgery. It is an outpatient procedure that he must wait 4-6 weeks to perform, as the brain needs time to heal. Apparently, as the blood clears out the visibility and accuracy improves for the surgery.
It sounds kind of scary. Apparently, two small holes will be drilled into her skull anteriorly and posteriorly, so they can attach a halo to keep her very still. Then they will perform a cranial angiogram to give them precision as they use a gamma knife to obliterate the AVM. The gamma knife applies radiation to the AVM at various angles. It was described as a one time procedure that takes three years to fully work. Every year she will receive a CT scan or MRI to check on the AVM. Without surgery there is a 3% chance of rupture each year, but Kaylee already succumbed to those odds, so we'd prefer to eliminate the risk.
After the three years, she will no longer be at risk of the AVM rupturing as it will be gone. Praise God! Thankfully after the procedure she can return to all of her normal activities: basketball, soccer, etc,. However, there will be three things she cannot do: power lift, scuba dive and play a horned instrument. Kaylee was a little concerned about not being able to scuba dive in Hawaii, but once we told her we snorkel not scuba dive and explained the difference she was fine.
Kaylee has been NPO (nothing by mouth) since they found the hemorrhage. They kept her NPO in case she needed immediate surgery. However, now that we have a plan she was given permission to eat. She had been talking about how hungry she was, so she immediately ordered lasagna, peaches and milk. Unfortunately, once the food came she only ate the peaches.
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