Saturday, September 16, 2023

Stereographic EEG - Done!

 Jenelle is amazing and did fantastic last week while in hospital for her Stereographic EEG (SEEG).  

We arrived for surgery on Tuesday, September 5 at 5:00 AM.  Jenelle went into surgery around 7:30 A.M. for an anticipated 5 hour surgery.  Dr. Olaya, her surgeon, explained that they would sedate Jenelle, place her into a "HALO" and then perform a CT Scan to make sure they had the exact location for where they were going to have a robot place 4 needle like probes into the Thalamus and Central Medium of her brain to track where her seizures were coming from.  An SEEG is also sometimes referred to as “brain mapping.” 

Miraculously, surgery only lasted about 4 hours, and we met Jenelle in the Post Anesthesia Care Unit where she was already awake when we got there.  While her pain was managed, she was very frustrated.  Because she had "probes" sticking into her brain, they placed mittens/boxing gloves on Jenelle's hands to keep her from getting too close to the probes to pull them out.  One of Jenelle's behavioral habits is to keep her hands at the nape of her neck, and ofter to pull on her hair.  Needless to say, she was not happy.

Jenelle was hooked up to the recording device for 3 days.  In all, we recorded at least one of all 3 of her different types of seizures. Tonic, Head Drop and Tonic/Clonic (aka Grand Mal), with a 3 minute Tonic Clonic seconds before the Epilepsy Monitoring Unit was about to disconnect the recorder!  Her Neurologist is very pleased and said that from the seizures they caught, they see that her seizures begin in the Central Medium and often start on the left side  her brain.  Originally the Neuro thought Thalamus, so this is huge as if we had not done the SEEG, we likely would have interested the permanent probes in the wrong part of her brain.

Jenelle had 2 surgeries – one to place the probes and one to remove them.  She had a bit of pain, and a lot of frustration because of the mittens/boxing gloves on her hands.  Because of the probes inserted into the brain, we had a "Sitter" sitting beside her bed the entire time to make sure she didn't try to remove them.  She seemed to have more pain with the second surgery and needed Morphine that night to sleep.  Since being home, she needed Tylenol the first day and has been fine without.  We eventually got home late Saturday afternoon.

The first few days after the probes were removed, she was pretty weak, likely from being in bed for 5 days.  when she walks which is likely from being in bed for a week.   Once home She recovered pretty quickly and was playing with her favorite toys.  Jenelle went back to school on Wednesday, and we are told was very happy to see her friends. 

The next surgery will be in about 3-4 weeks to place the permanent RNS (Responsive Neuro Stimulator.)  That recovery time should be about the same, assuming she does just as well in recovery and just in time for her 21st birthday!  When we know more about that date, I will let you know.  For now, we are just enjoying being home, eating food that isn't fast or from the hospital and getting our girl back on her routine.

Thank you all for the continued prayers and positive thoughts.  As always, I'll keep you posted!

5:00 AM -What is going on?

After 1st surgery with a Luigi Mario Cart cap protecting the probes.

Moving from PICU to 5th Floor.

Sweet moments with Daddy!

Waking up after 2nd surgery - Messy Hair, don't care!

And after 4 days at home, back to school!