Making Adjustments

We have found ourselves back in the hospital again. Carly had a few decent days after her shunt surgery last week, but she continued to have what looked a bit like a seizure throughout most days. She became less interested in eating over the weekend, and her oxygen saturation levels were unusually low. We had to start oxygen support at home for the first time ever. Yesterday she had a period when her heart rate was very low, and a larger seizure looking episode so we knew we would need to come to the hospital today.

Carly spent most of the day here hooked up to an EEG to see if her episodes really are seizures. This monitoring will continue over night, while Carly also gets fluids and antibiotics to help treat a lingering UTI as well as an upper respiratory infection. Tomorrow we will try to determine if she should have a change in her seizure medications, and if any changes should be made to the shunt opening pressure. Hopefully the plan will have Carly feeling better soon. Thanks for the love and prayers that you have been sending her way.

Love, Brad

Slowing The Flow

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.

Love, Brad