Anyways, then he said something that I don't think I will ever forget. He said that we had 2 options. Either leave it alone or do surgery. He said, if we left it alone, it would grow bigger and bigger and it would cause Caleb's heart to have to work harder and harder to supply blood to that ear/temple. And it was possible that by the age of 30 or 40 years old (if left alone) that Caleb could have congenital heart failure. My heart almost stopped beating at this point. Thoughts were spinning in my head and tears came to my eyes immediately! My only thoughts that I remember is that possibly with the surgery, they could take this off, and just readd skin to his ear. Not my favorite thought, but at least he would still have his ear (the one he was born with), right? Wrong...
Then our second option was surgery. They would remove the AVM and then we wouldn't have to worry about it anymore (as long as it wasn't in his brain as well because many AVMs go unnoticed for years b/c they are in the brain and you don't realize it until the person has seisures). What? Remove it? (ok, so I was still thinking, take the skin off and rebuild the skin on his cartilege) In his BRAIN? Seisures? STROKES? MY BABY of 4 years old???? OMGOSH!!!!!!!!!!!!!!! Those tears that were in my eyes, oh no, they burst out and I BAWLED FOR almost a week!!! Everytime I looked at my precious, perfect little boy, I would cry again and again. It was so hard telling our families. Ross told his parents (and I cried), then I told my mom, and I cried more. I never realized that one person could cry so much!
Oh but that wasn't all, I asked him, 'So we would remove the AVM and then Caleb's ear would be normal again, right?' (I was fighting back the tears still, but it was a losing battle. LOL) Dr. B. and Julie were so sympathetic. He shook his head and said that no, removing the AVM meant removing the ear and all of the skin that had it. He said that we had to make sure that we got it all off because if we didn't, it was possible that it could grow back. I lost it then. I couldn't hardly breath.
He did say that there were other techniques that were being done, but that he didn't feel that they were overly successful (like Laser surgery - they laser the skin and then it looks... I don't know, not normal). That didn't have a high success rate because either the AVM could come back, or the skin would not look normal. I really don't remember if there was other options that he mentioned that day. After that it was pretty much a blur (a very tearful one at that).
So we decided that we would go through with this and have the AVM (and Caleb's ear & part of his scalp removed), and then we would rebuild his ear about 2 years later. First thing we had to do was have some tests run (MRIs, arteriograms) and make sure that this was indeed what we were dealing with and to make sure that it wasn't in his brain. The MRI wasn't that bad. They put him to sleep, and Ross & I were right there with him the whole time. So although it was kind of tough to see him go through that, it wasn't too bad. (both tests were run Jan. 2001)
And then the arteriogram. Now that was a LOT worse than the MRI. First, there were a lot more chances being taken. Second, I couldn't be right there with him (like I could have done anything if anything went wrong to begin with LOL). And third, that was my baby that they were taking off with and running a tube up by his heart and then going to his ear and brain!!! Needless to say, I was stressed out and a basket case. On the inside at least. Caleb, he didn't see the half crazed lunatic that I felt on the inside. Only Ross saw that part of me.
Well we made it through both tests, and then the wait. We had to wait for the results from both tests (to make sure it wasn't in his brain and to see just how deep it was). Those 2 weeks seemed like an ETERNITY!!!!!!!! There were so many prayers going out for Caleb! And I do believe that those prayers made all the difference!
FINALLY, two weeks passed and we got the results back...
