I know you all have a lot of questions. Lots of positive came from today, it really did.
** Dr. Bolognese (NY Dr.) is one of the Top Dr.'s in the US. He makes 8.2 million a year, so you decide. HEHE. But, anyhow we learned more with him in four hours then we have in two years.
**If we would had not went to New York, we would have not known about Kyra.
What has happen in the past we can not change. Wesley had a complication from surgery. The Dr. decided for what ever reason instead of opening him back up and fixing the patch he put in a shunt. Dr. Bolognese's guess is that he thought it would cause more complications by opening him back up. But, what that means now is Wesley's life now depends on his shunt and this is forever. But, we can not change that. Nothing can be done.
I hate to say, but I am a lot stronger then Wesley and he is not taking this well.
His shunt needs to be revised and it will need to be probably once ever two years, because his vesticles are so small.
Why not get this done in New York? Because we would have to come up here everytime, and because of cost and our insurance is out of network. It was $550.00 just to talk to him today.
Shunt revisions are not as big of a deal. So Wesley can continue seeing Dr. White in Dallas which we really like.
Dr. White's nurse called me this afternoon and he wants to see him Monday at 11:30. I have a feeling this shunt revision will be done pretty quickly.
As far as Kyra. I have no clue why they did not see this already on her MRI. Dr. Bolognese's stated that he felt like they were looking for the Chiari and missed the "spot" and the fact that her brain stem does not look right. He said the Chiari right now is mild and thats why they probably did not see it. But, she is only four and Chiari in MOST people gets worse with time. And, she is already showing signs. The "spot" he thinks has to do with her Pituitary Gland. Which she may have a growth problem. There is a syndrome he is worried about too that goes along with Chiari. So, Kyra has several test and Dr.'s that will need to be done. I have called our family Dr. and he is seeing me on the 14th to discuss all of this and get tests set up.
This about sums it up. All I know right now. I have to stay strong. I have too. Now more then ever for Kyra. I just feel like the world is on my shoulders. We tried to get an earlier flight. We want to come home. But, we are flying out EARLY Sunday morning. Not for sure what we will feel like doing tomorrow. Everything is so expensive here.
I really appreciate everyone's prayers!