Chasing Miles

We met with our neurologist and the neurosurgeon at Primary Children’s on Thursday. We’re proceeding towards surgery but have to get a neuro-psychological evaluation and a pediatric ophthalmologist to measure her vision field cut before we go back. Neurosurgery will meet with us again on March 3, and I expect that’s when they set the date for surgery. I think the surgery is called a corpus callosotomy. The basic procedure is for the surgeon to disconnect the two halves of the brain by making two incisions in the corpus callosum. Most of Natalie’s right temporal lobe is already gone from the stroke she had. The right hemisphere is where the majority of seizures are taking place, so turning that side “off” gives us a 70% likelihood of stopping the seizures completely, and a 90% likelihood of significant reduction in seizures. Her memory and speech shouldn’t be affected by the surgery, or will be minimally affected. There will be a complete left field vision cut (she will be blind on her left side). Her left side paralysis will continue and may worsen after the surgery, but should improve back to her current range of motion with some rehab.

The doctors don’t think her personality will be affected.

The surgery takes place over one day. She will stay in ICU overnight, and if all goes well she moves to another room but stays at the hospital for about 10 days before she can go home. There will be a drain for fluids after surgery, with the main complication from surgery being Hydrocephalus (water on the brain) where a shunt would have to be implanted to control excess brain fluids.

The surgeon said that he does about two of these surgeries each year, and has been doing this form of surgery for the last 18 years.

On July 26, 2011 Natalie went to Primary Children’s Medical Center in Salt Lake City to have a Pediatric Peri-Insular Hemispherotomy performed to control her seizures.   We started the conversation in 2010, and began tests in September 2010 to determine whether Natalie would benefit from this procedure.  After completing interviews with her pediatric neurologist, her neuro-surgeon, conducting EEG, MRI, MEG tests, vision field testing and a neuro-psychological exam a final recommendation was made to proceed with the surgery.   There is a 70% chance that Natalie’s seizures will stop, and a 90% chance to significantly reduce seizures with this operation.  This is the story of her journey.

Des is the surgical nurse. She came out to the pre-op waiting room to answer more questions, and to make sure Natalie was ready. It’s about 10 minutes before the doctors were ready.

Angela, Marisa, Gabriel and I have checked into the surgery waiting room just before 10AM.

We have six hours to wait here before Natalie is out of surgery and moved into ICU.  Des has promised to call us every 1.5 hours to provide status as the surgery is conducted.

Natalie’s update: 3 hours in and surgery is proceeding well. Heart rate, temperature and breathing are all normal. The nurse was late calling because she grabbed some lunch, which is a good sign. Next call is planned around 2:30 Mountain time, surgery is expected to run long.

Natalie’s post surgery update – we got a surprise, Natalie is out of surgery and headed over to the ICU. The doctor said she did really well in the operating room, no complications. She isn’t going to require a drainage tube (another surprise), so it’s just stitches to deal with. We should be able to see her in ICU within the hour.  Please take a deep breath for us.

Natalie is recovering in the Pediatric ICU (PICU) and off ventilation. She’ll be sleeping for a while now. The anesthesiologist has come out and spoken with Angela and I to let us know (again) that the surgery went smoothly.

We met Dr Kestle in the PICU and discussed Natalie’s surgery further.  Natalie was extremely pale but was responding.

A better view of the surgical incision.  The good news is that she’s got lots of lovely curly hair to cover that up!