Alexis had her first cerebral angiogram. Just google the test and I bet you will be scared out of your mind. I know we were. However, the information that they can gather from this test is so incredibly valuable. So in a nutshell it was needed. The results were that she had a brainstem AVM. If you are a parent/adult with an AVM I suggest you stop at the specifics of your AVM in research. I had to find out the hard way, alone, frantically scrolling through medical article, medical blog, and other reliable sources of information to find out that my Alexis had to been cursed with the unluckiest of location. Not only do brainstem AVMS tend to have more complications but they tend to be more fatal and be lifelong issues.
So let me just grab another box of tissues before continuing...
The only good news is that hers is a grade 3 AVM. This is better than say 6 where they often tell you to just think about quality of life vs. medical intervention. Yes, much like cancer they categorize the vessel by size, location, blood flow affected, surrounding areas and well more likely to cause you problems!
All in all she tolerated the procedure really well. It took so long it seemed like. She went back at 9 am and we didn't get to see her until 2pm. We did get an update at 1 that she was out of the OR and up in the ICU doing well.
All in all Alexis didn't seem too affected by all of this. She was asleep before they did any IV ( she had to have one regular IV and an arterial line). This is so that they can administer blood and other drugs quickly in case of an emergency as well as have continuous blood pressure monitoring. YES Its that serious of a test. She was kept sedated for four straight hours as she was not allowed to sit up or bend her leg.
During those four hours I got to lay in the bed with her. Dad anxiously watching, helping and well comforting me as well... thankfully after four hours her happy drip was turned off. She sat up drank some juice, had some food and walked around. Then with strict instructions we were allowed to go back to the Ronald Mcdonald house across the street where finally at 9pm Dad and I were able to eat our first meal of the day and watch in amazement our resilient daughter play in the play room!
So let me just grab another box of tissues before continuing...
The only good news is that hers is a grade 3 AVM. This is better than say 6 where they often tell you to just think about quality of life vs. medical intervention. Yes, much like cancer they categorize the vessel by size, location, blood flow affected, surrounding areas and well more likely to cause you problems!
All in all she tolerated the procedure really well. It took so long it seemed like. She went back at 9 am and we didn't get to see her until 2pm. We did get an update at 1 that she was out of the OR and up in the ICU doing well.
All in all Alexis didn't seem too affected by all of this. She was asleep before they did any IV ( she had to have one regular IV and an arterial line). This is so that they can administer blood and other drugs quickly in case of an emergency as well as have continuous blood pressure monitoring. YES Its that serious of a test. She was kept sedated for four straight hours as she was not allowed to sit up or bend her leg.
During those four hours I got to lay in the bed with her. Dad anxiously watching, helping and well comforting me as well... thankfully after four hours her happy drip was turned off. She sat up drank some juice, had some food and walked around. Then with strict instructions we were allowed to go back to the Ronald Mcdonald house across the street where finally at 9pm Dad and I were able to eat our first meal of the day and watch in amazement our resilient daughter play in the play room!