Monday, March 21, 2011


No, for once, I'm not talking about snow. Although it did do that today.. the first day after the first day of spring.

This time the accumulation is CSF around the shunt. For those not in the know, Charli has a valveless VP shunt, something that should not be accumulating fluid because there is no valve to regulate flow or to not regulate flow. So something, Lord knows what, is malfunctioning. According to the CT and shunt series done in the ER Thursday there were no obvious blockages or kinks in the tube.

So currently we are dealing with mystery fluid pocket. And let me tell you, mystery pocket is driving me out of my mind. I am scrutinizing every inch of her head, looking for other possible hygromas and lines of demarcation, every little behavior, every head tilt. Every time she doesn't want to finish a bottle right away. I'm GOING CRAZY. Normally it's malfunction, ER, emergency surgery. While scheduled surgery certainly is better for all involved, it's still nerve wracking as all hell to sit her and count the hours til our appointment with nsurg. OH. that reminded me I wanted to email Dr. Sood and see what he thinks. That may have to wait til tomorrow now. My eyes are getting heavy.

My only hope that tomorrow is quiet, and that no other symptoms start to present. Hopefully she can maintain til we see Dr. Adamo on Wednesday. Dr. Brand feels that he is most likely going to schedule a revision. There is no reason for fluid to be built up there, and now that her stomach issue has resolved there should DEFINITELY be no reason for a pressure change.

Sigh. I don't even know how I feel about this. This valveless shunt has worked the best, we've had no overdrainage which was a big concern, and it's lasted the longest out of all of the other ones. I don't know why we keep having problems with them. It's driving me batty.

Top that off with when I went to pick up Charli from her dads today her grandmother showed me a video of my nephew CLEARLY having a seizure (this is all new...the past week) while playing a video game. To me it looks like partial/absence. Probably will go on Depekene. Just what our family needed, another epilepsy. So that has had me thrown off all day. I'm a freakin mess. I need to lay down for 24 hours not get out of bed except to pee and make coffee. That's it.

So for those of you that pray, please pray for my brother and sister in law, and for Charli's grandparents...they are all under a great deal of stress right now and obviously very upset and need some good thoughts and lots of prayers. If you could say some for us as well if we need to have surgery again I'd appreciate it.

I'll update more after Wednesday when we see neurosurg.

I'm beat. Going to bed. Nite all.


erica said...

praying for you all tonight!!

happy's mommy said...

Good grief, Karen. TOO MUCH DRAMA!