Thursday, February 12, 2009

Disappointing news...

Unfortunately we had a disappointing appointment yesterday. Carson's recent head ultrasound indicated hydrocephalus, a fluid increasement in Carson's ventricles in his head. Hydrocephalus is controlled by a surgically placed shunt in the brain. The shunt is attached to a tube which empties the excess fluid into the stomach. Because Carson had some extra fluid he now has an appointment in two weeks to get a CT scan. This will show a 3-D image of Carson's ventricles so they can better understand his situation. The CT scan will determine if Carson needs a shunt or if we still will undergo some more waiting and watching. If they decide that a shunt is necessary the surgery will be scheduled for the following week. In other words, it's a possibility that Carson will have this surgery in three weeks.
The idea of putting Carson through another surgery breaks my heart, we were hoping that when we brought him home it was for good. The surgery itself and what it could mean for Carson's life is also scary. Typically people who have shunts undergo shunt revisions throughout their lives. A shunt revision is a surgery to fix a clogged tube, or an infection. Some people need many revisions and some a few to none. We're told that if you don't notice the symptoms of shunt failure it is fatal.
We always knew that a shunt surgery was a probable possibility for Carson, but obviously we were hoping he would be one of the lucky ones who didn't need one; and of course it's possible that he still may be. Hopefully we will know in two weeks.
Nate and I always remark how fortunate we are to live in a country during a time period where these life saving measures are obtainable to us. We are so thankful that we have access to the things that Carson needs and that we can provide those things.
Please pray that in two weeks the CT will reveal less fluid and that Carson will not need a shunt.


Rural Felicity said...

G had his shunt put in at the same time they did his back closure, so it's the only thing we've known with him.

It's funny (not haha) but when I try to put myself in your shoes (not having the shunt), I find myself feeling panicky in "what if he had no shunt and I didn't notice the fluid was building up??" It's interesting how what's familiar, seems to be less anxiety-inducing. :)

That all being said, if he does need the shunt, you are introducing another bunch of unknowns (which are never fun) but it isn't as daunting as it seems. You will know, trust me, if the shunt is failing. I imagine without the shunt you've been given a list of things to watch for to indicate pressure, and with the shunt, you'll pretty much get the same set of instructions if he ends up needing one.

I hope he doesn't need one (no one ever wants another surgery for their little one!), but my little guy has always had one, and despite its failings, I'm awfully thankful to have it! Without it, he wouldn't be here.

Thoughts and prayers sent your way...

Anonymous said...

Dear Em and Nate,
We will continue to pray for Carson and you two. Parenting a child with special needs is a rough road but you are right about the wonderful availability of services right in your own back yard (so to speak). Take care,
Ellen and Duster

Anonymous said...

Hi Emily and Nate,
Grandma and Grandpa E are here with me, reading your update, and are happy to know what to pray about." We pray for Carson every day and now we know what to pray for specifically"
We love you and want the best for you all, and will be keeping you close in prayer. He is adorable, and we all think about you all!!!!
talk to you soon.
love, Aunt Sandi for us all :)

MommaKathi said...

We will, of course, pray that Carson doesn't end up needing a shunt. Justin had his put in when he was a week old. As scary as it sounds and seems, it isn't that bad. Don't worry about not being able to tell if he would need a revision. It really does become apparent. Justin went 8 years in one stretch without a revision. It sounds like you have done your 'homework'. So, I am sure you will handle whatever comes your way. Carson is lucky to have parents like you.
Kathi & Justin