Savanna was under the care of her doctors and anesthesia for about 14 hours yesterday, and is now on the road to recovery.  She spent the first night in the PICU, and as it was as predicted, it was a difficult night.  It took a while to find a combination of medications to help her pain level and soothe the agitation.  Overall, she is not experiencing any serious complications.  The swelling was significant immediately following surgery, but reduced dramatically during the first night in the PICU.  By the morning, she was sleeping well, and the swelling had come down significantly.  She was released to the EMU, which was really good news.  She really isn’t herself yet, and all normal medications are continuing for now. 

Moving forward….

The plan is to continue medications as they were prior to surgery, wait, watch and see how she does.  Once she recovers from the surgery , we will begin to reduce medications, normalize her diet, and observe.  If we see behavior that appears to be seizure activity, then EEG and imaging studies will be ordered.  Right now, the neurosurgeon felt like the abnormal tissue was removed in its entirety.  However, the epileptologist said she measured abnormal spikes and activity in the parietal lobe, further up and back on her head from the primary seizure focus.  But collectively, they didn’t feel she could tolerate more surgical time, so they left that tissue in place and proceeded to close.  This doesn’t mean she will have seizures in the future.  It also doesn’t necessarily mean she will need another surgery.   

Only time will tell.

We are expecting to see acceleration in her development, due to the lack of disruption during the day when she is having seizures.  We are expecting to see some noticeable visual deficit in the right half of each eye due to the occipital lobe tissue removal (on the left side).  They were able to spare the occipital pole region of that lobe, which is where central vision data is processed.  So the level of peripheral vision deficit is unknown at this time.  We will restart occupational, physical, and speech therapy as soon as she can participate.  We are really anxious to get her home.

Special thanks to Rebecca’s parents, Ray and Mary Lou, and my mother, Barbara, for holding out during the delays and staying here through the surgery.  They have provided emotional support during this difficult period with Savanna.  They have also provided some logistical support with managing the care of the other kiddos while Savanna is an in-patient.  Thank you to you all from both of us.

Finally, a special thanks to Andrea, our Au Pair.  She has really stepped up during this time and allowed our family to be where we need to be.  She has learned what is required to take care of Savanna and has provided me much needed time to guide her care, deal with the insurance company, and provide support to my company after my departure.  Thank you from both of us.

-Mom and Dad

(Ken and Rebecca)