On the road again...

We made it home! We did end the week with a last visit with Dr. Marks, and a confirmation that the DBS in its current position was not providing much (if any) improvement in Adam's muscle tone and mobility. We did see glimpses along the way, such as the day he took steps down the hall at the hospital. But the positive effect faded in a few hours, and the only other time we saw an improvement after an adjustment to the settings it only lasted a few minutes.

The current thinking is that the lead placement in the internal Globus Pallidus (GPi) turned out not to be a good location for Adam. It is the more common placement for dystonia patients, but since Adam's damage is in the same area, it appears that this doesn't work in his case. Dr. Marks is currently thinking that it might be beneficial to place a second lead in the subthalamic nucleus (STN). Some patients have benefited from having leads in both places. He will be meeting with the on-site team, and we will be going back down to Fort Worth in about a month to discuss it further.

So as we suspected, we left the hospital with some disappointments and some hope. We've been down this road before, and are determined to continue to keep our collective chins up and work toward the best possible outcome. What a long, strange trip it's been!

And speaking of long strange trips, here we are getting ready to leave the hospital.

On our way out Adam wanted to stop and take this picture for his uncles. There are a number of gardens in and around the hospital. This one (called the Family Garden) specifically has a dedication 'in honor of all the uncles in every family'. Must be a story associated with that, although we don't know what it is.