Carly continued to have trouble adjusting to her new shunt, and for the first time ever the issue was too much flow when she is upright. Thanks to the new, larger tubing the shunt is working but the valve we have been using was purposely chosen to be as simple as possible and did not have a component that prevents over draining when upright. Carly was not able to adjust to this low pressure and she could not be upright for more than 10-20 minutes before she would start having what looked like seizures. Over the last few days she was getting worse, so today she headed back to the OR for a new shunt valve. This valve has a mechanism to prevent over draining and it is also has several pressure settings to fine tune it to her needs.
The surgery went well and Carly is resting in our favorite room at UCSF. She is still having the seizure activity that we saw before surgery, which we hope is just part of re-adjusting to a more normal pressure. It has been a tough stretch for her recently and hopefully this is the beginning of an improving trend. We are envisioning her with a smile on her face, a big appetite, and able to get out and about to spend time with her friends and family. Her strength, and the strength of Team Carly, will help get her there.