Welcome to our little space on the net! This blog is just about our family life, and began as a way to keep family and friends updated on what was going on with my pregnancy with our first son, Gage. We've since added Evie to our family, and I continue to blog about family life, car seats, spina bifida, and anything else that catches my attention.

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Friday, May 29, 2009

More Surgery

Gage's PT let me know a few weeks ago that she was concerned with his lack of progress, and even regression with his walking. It seemed that he was getting weaker and dragging his feet in his walker. We talked to the nurse at Spina Bifida clinic and got an MRI scheduled to check things out (and a new neurosurgeon in the process). The MRI was Wednesday and we saw the new neurosurgeon yesterday. Gage has 2 things going on that require surgery.

First, almost all people with spina bifida have something called a Chiari II Malformation. This is where the brain stem gets pulled too far down into the spinal column and it makes the cerebellum misshapen. We saw that on ultrasound before he was even born. The neuro ordered a flow study with the MRI, to see how much cerebrospinal fluid (CSF) was moving through the opening. Turns out it's not much at all. He will go in and remove part of his 1st couple of vertebre to give the brainstem room.

Second, and what's probably causing the problem, is an arachnoid cyst at about shoulderblade level. It's pressing on his spinal cord and probably causing his leg weakness. It's made up of stuff that's supposed to be there, so as far as I understand it, the surgeon will be unsticking it from the spinal cord. This will at least halt the damage it's doing and hopefully he'll regain the little bit of function he's lost.

All of this will require a night or 2 in the PICU and 3 or 4 nights on the floor. We thought surgery would be next Thursday, but apparently that day was overbooked, so as of right now, it will be June 22. We have requested that it gets moved up if there are any cancellations. This has been affecting him for over a month now. As we see it, the sooner we can get it taken care of, the better.

Of course we hurt to think about Gage having to have surgery again. This will be #6 in less than 2 years for him. We know that he's in God's hands, though, and this needs to happen. We appreciate everyone and their support and prayers! As Tony has said, it is what it is.

5 comments:

Ashley said...

I'm so sorry to hear Gage is having trouble. We'll be praying for a successful surgery.

Emmilu said...

I'm so sorry, Jess... The three of you will be in our prayers.

Adalynn said...

Keep us updated and we will be praying! You must have a really good PT!

Ciaran's parents, Jon & Wendy said...

Oh my...I can't believe this. Gage has to have a decompression. Crazy. Oh, mommy, I hear this is a rough one. I'm praying for him and your sanity.

I know he will be fine but my heart is heavy because I've heard this is a tough surgery for everyone involved. I'm with you in thoughts and prayers. <3

Beverly said...

We love you and you'll be in our daily prayers. We'll be watching for your updates.