Gracie's Shunt Revision Update

Tomorrow will mark two weeks since Grace had her shunt revision so I thought I'd better post an update! Grace's surgery went really well. The doctor replaced her shunt and catheter, but didn't have to replace the tubing that went into her abdomen so she didn't need any incision on her belly. This shunt is bigger and it sticks out quite a bit more on her poor little head. But it could potentially last the rest of her life and she'll grow into it! For now we are investing in some (large) hats.

The dark line to the left of her stitches is just leftover adhesive from her bandage. That stuff WILL NOT come off!

You can sort of see from this angle how much it sticks out from her head.

We went to the neurosurgeon this past week to have her stitches removed. The nurse practitioner removed the stitches and noticed the skin felt "spongy", so she had the surgeon come in and check it. He took one glance and said, "She's leaking spinal fluid." (It always amazes me how he can just look or touch her head and know what's going on. But he's been doing this for nearly 30 years!) Apparently the hole where the catheter was placed hasn't closed up yet. To try and explain it a little better, Grace has a small hole in her head that allows the catheter to enter her ventricle (brain). The catheter works kind of like a straw and pulls the fluid out of the ventricle into the valve (the straight incision right behind her ear) and down the tubing into her abdomen. The hole where the "straw" is hasn't closed up yet, so the fluid is choosing the path of least resistance and coming out of that hole and pooling around the shunt. What we are hoping for is that the hole closes and everything works as it should. What could happen is that the hole doesn't close or this means part of the shunt isn't working. We go back in two weeks to have it looked at again. If it isn't better, the surgeon will have to "tap" the shunt (stick a needle into the area, withdraw fluid and test the pressure) to see if the shunt is working properly. Please pray that everything works correctly! Anytime they have to introduce a needle into her, it can bring the risk of infection.

Other than this potential setback, she is doing so well. She's laughing, smiling and interacting with us like she hadn't before. Here she is giggling at the way Riley's head feels. Silly kids.