So we had our appt and to say the least we are very disappointed. We thought we were going in to evaluate what he thought about the blood flow going the wrong way and he said that wasn't his issue to deal with that it was I think he said cardiology (I was in such shock I don't remember what he said) to deal with. He said we were there to get another opinion for the same reasons we went last summer. No I would not have gone if I knew that's why we were going. It's taken me a couple of days to process and calm down. It really helped that yesterday I met a heart mommy whose kiddo has more severe issues than Eli both cardiac and neurologically wise. She and the wonderful old neighbor that use to live across the street basically sat me down and said they will never say brain damage. They won't because they don't have ANY answers. The brain is too complex to understand expecially since so many issues can't be seen. And my old neighbor's daughter who is grown has brain damage and has all of Eli's symptoms so she has already been down this road even if it was long ago. And our new friend's son is 9. So I just have to come to terms and figure out how to deal with his issues that will never go away.
On the up side of the appt (if you call it that) he did address Eli's "passing out in slow motion" episodes. He asked me some questions and thinks Eli might be having microsleeps. He thinks he might have a sleeping issue at night. After googling (yeah I know bad slap my hand) I come up with a few reasons why this could be happening. I can rule out a couple almost automatically, the other two are a little frightening especially since one of them the cause is often brain damage. So we have an EEG scheduled for next Tuesday. I'm praying Eli holds still and cooperates. He does good with medical play but I don't have any ideas on what to do. Depending on what the EEG shows we may be having a sleep study. Although I think he is going to end up with a sleep study no matter what, but he may end up with other tests after as well. It's another wait and see. (Can I say I'm tired of that game? It's not as fun as hide and seek. j/k )
I do have a call in to his cardiologist to discuss the blood flow issue further. I honestly have reservations on either way they go (whether to fix or not to fix said artery) so I'll be fine I just don't know what the next step is.
Anyway, I just wanted to let you ladies know. As always whenever things like this happen I go into lurk mode so if I become a little quieter you know why.
I don't really know what to say other than I'm sorry and that I'm here to listen. Yes, I have found from experience googling can be very bad. I wish I could go back to before I googled Joshua's diagnosis. We just have to hold on to hope with all we've got and be the best moms we can be.
(((hugs))) I'm sorry it wasn't a better visit. It definitely sounds like you have a lot to process but you found a good new support system too and hopefully that will help.
Natalie & Dan - June 2, 2001
Samma - Nov. 5, 2004
Tommy - Oct. 19, 2007