Thursday, July 2, 2009


We went to our MRI appointment on Monday.  We had one or two done before he was two and then we had another one in...I think it was November.  The results were always the same.  He has a lot of brain damage and scar tissue.  They have been especially worried about the 3 and 4 ventricles because the scar tissue seems to be blocking them partially.  Last time they said they didn't want to send us to a surgeon because a surgeons answer to anything is surgery.  Makes sense.  So we waited to see what would happen.  

By the time I made it back home from the hospital, the radiologist had called my son's doctor who called us and the emergency contact and us again.  He started out so benignly.  "It's not good but it's not bad."  Okay.  It looks pretty much the same as the last one.  But it isn't better.  So waiting and seeing didn't do us any good.  It might be a little worse.  Hard to tell.  But the point would be that the pressure didn't go down.  Had I seen any seizures?  Had I noticed him getting worse with anything?  Was I sure?  I don't know.  He had seemed mostly normal I thought.  As normal as he is.  Here is the number for the Neurosurgeon.  

Brain surgery.  Next week we go in and find out just exactly what will happen.  I figure wait and see is probably out of the question.  We already did that and I guess it didn't work.  Besides, how long do you wait if it could mean additional brain damage?  We really can't afford to do that.  So what's next?  I have no idea.  Next week can't come soon enough. 

In the mean time I am slightly out of my mind.  I cried for 3 hours straight the first day and on and off for the past 3 1/2 days.  I can't remember anything, I can't do math, I can't sleep until I am out of my mind tired.  This could be the craziest I have been since he got meningitis.  Blah!  Not knowing what will happen is killer.  I would give just about anything to get in sooner but no can do.  *sigh*  Apparently no one cancels or postpones their appointments with a neurosurgeon.  Go figure.


Nancy Brown said...

Do you know who you are seeing? I have a great respect for Dr. Walker. He is such a great listener and is amazing. We have a shunt. We have had 2 revisons this last year but before that we were good for about 2 years. We had a recalled shunt that malfunctioned. BUT our thoughts and prayers are with you and your family. I hope everything goes ok. how far out is the appointment? Is itpossible to have the neurologist call and get you in sooner?

HUGS to you momma!

Melissa said...

Katie, I have been thinking of you since you told me about the MRI. I can't seem to get it off my mind. I really hope that you can find some sort of peace with the decision that is made. It is soo hard to be in the 'unknowing' wait. I will be here for you and do what I can to help you. Call me whenever you feel overwhelmed or just want to talk. I will see you on tuesday, but I will be praying for the appt to go well on wednesday.

I think you have more strength than you realize. You will make it through this. You are one strong momma! As I have gotten to know you and JT over the last year, I have been so grateful for someone who 'gets' it. JT is a special boy who I have come to love too. I will be there for you and do whatever I can to help. Please don't hesitate to ask!

tiptoe mama said...

I'm so sorry to hear that you have to go through brain surgery with JT. I can empathize with the crying and not sleeping. These things with our little ones are so traumatizing. hang in there. I too believe that you are stronger than you realize, and I'll be praying my guts out for you. Good Luck!

hayngrl101 said...

I will remember to keep you in my prayers. Just try to remember that during our darkest hours, we are not alone and Heavenly Father will help us get through those seemingly bleak times.

You are loved.