Neurosurgery Check Up

We had a check up with Jack's neurosurgeon yesterday. He's been Jack's NS since he was born. Jack has hydrocephalus which required a vp shunt to be placed when he was in the NICU. Thankfully Jack hasn't had any problems with his shunt and we're on a yearly check-up schedule with the NS.

Jason came home early from work to be with Morgan so I could take Jack to the appointment. We left early and I decided to take his walker. We parked in the parking garage and I carried Jack and the walker the short distance to the garage elevators. Once we got to the elevators I put Jack in his walker and he was so excited! He walked into the elevator...stood there while we went down and I helped him turn around so we could walk out. He walked all the way down the ramp to the sliding doors at the South Rehab entrance. He wasn't paying attention and he got his walker caught on the sliding door. A nice gentleman held the doors from closing and Jack maneuvered and made his way through the doors. He then walked down the corridor and made a right hand turn into the waiting area! I was so proud of Jack.

We signed in and as we were waiting for the doctor he took several trips down the long hallways...a few times he asserted his Independence and wanted to go in a different direction. For the first time he was on his own. It was amazing to see. I liked that he didn't listen and insisted on going back to the bathroom instead of back to our exam room! Normally Jack doesn't have a say. He's usually in his wheelchair or stroller -- both of which I control. He did take instructions well and I was able to verbally instruct him on which way to turn or how to get "unstuck" -- it was truly a milestone day!

We met with the NS and he was happy to hear that Jack hasn't had any signs of a shunt problem. We talked about his candidacy for surgery to reduce spasticity. We talked about SDR surgery -- he didn't think Jack was a good candidate due to low muscle tone in his hips as well as dynamic tone (tone that changes with positioning). We also talked about a baclofen pump -- which he does feel Jack would be a good candidate. There is a test they do to see how the medication would affect Jack. If we decide this is what we want to do we can schedule the test. He told us it will look as though Jack swallowed a hockey puck -- Jack is small and has skinny little belly and the pump which is placed in the abdomen will protrude out. The numbers he gave us for the pump system that they use were refilling usually happens every 3 to 6 months in the clinic. It is done by a needle into the pump. The entire system usually needs replaced about every 7 years because the battery dies. I asked if placing the pump puts Jack at risk for a shunt infection. He said he's only had one patient with a shunt end up with a baclofen pump site infection after surgery and the shunt did NOT get infected. He said patients with shunts usually end up needing less medication from the pump because the shunt helps move it along the CSF tract. I thought that was an interesting tid-bit. There are risks -- infection after surgery, pump failure, over or under medicating (both of which can be extremely serious). The pump is programmed by a human being so there's risk of human error. The benefits are many though. The pump puts medication directly in the spine which goes directly to the spastic muscles. He said he feeds the lining high which would greatly reduce the spasticity in Jack's right arm...enough to be functional with a lot of therapy. Jack's legs would benefit making walking easier. It's a tough call. He gave us some information and a video to watch. Silly us, we don't have a VCR anymore -- just a DVD player so I am going to have to find somewhere to watch the tape!

We are taking our time making the decision. There is no rush. I would love to hear from anyone who has been though the surgery themselves or have kids with the pump. I will keep you all posted on what we decide.

Today is Jack's first day back at school for over a week! I will miss him :( I am sure he'll be so excited when the bus gets here!!