Friday, December 4, 2009

Bad News

I have calmed down a bit and will try to explain this the best I can.

First Wesley.. After he had the Chiari surgery and then a month later got so sick. What happen, is he had a complication from surgery. His patch in his brain started to leak CSF fluid. Instead of the Dr. going in and fixing it (like he should had), he put a shunt in. Now 18 months has past and it can not be fixed. This means, his life is dependent on his shunt. He has very small brain ventricles and because of this his shunt will mess up probably at least once every two years. Hints, why he is so sick again. He needs a revision. There is no need to get it done here. Because of cost we would have to continue coming back. So a call has been made to Dr. White in Dallas to get Wesley back in.

I chose to take Kyra's MRI to show the Dr. just to make sure. Kyra does have Chiari. Over time it could get worse, we do not know. Since she is already showing signs, chances are very high. There is also another spot on her brain that has to do with her Pituitary Gland. There is also another syndrome that she may have that goes alone with Chiari. She has a number of tests that need to be ran. I already called her Dr. and I am seeing him on the 14th to discuss everything with him and get her to Children's Medical for testing. If and when she does have to have Chiari surgery I would be bringing her to NY. For all other problems could hopefully be cared for in Dallas. We are looking at many issues. Growth problems, scolosois, on top of Chiari.

We are broken and so upset. Wesley has not said two words. He is very depressed and do no know that he will be able to continue working unless something is down with this shunt or he gets better. I feel like I just do not know what to do anymore. That's about all I can say right now. We are very upset and worried about many things. We are trying to keep our faith so bad, but it is hard to understand Why. Why Kyra? Why my Kyra??


Shari said...

Huge hugs to your whole family Kristy. You are all in my thoughts and prayers.

Jannie Bellows said...

You are one of the bravest people I know.
Read Psalm 46. David was in the middle of more than you and I can imagine BUT pay special attention to verses 1, 10 & 11. God told us he is a refuge and strength EVERPRESENT HELP.(vs 1)
We need to BE STILL & KNOW I AM GOD.(10) He is our fortress. (11)
Remember you are loved and we are lifting you and you sweet family before the Lord God of the universe.
Jannie Bellows