Alexa

No matter what life throws at her, Alexa perseveres

November 8, 2017

This past Halloween, Alexa had a vagus nerve stimulator (VNS) implanted in her chest wall. Her mom Ashleigh said it came after months of fighting with seizures and apneas, high-powered medication, and a newly developed bleeding disorder.

"We got a point where she was having multiple seizures with apneas (meaning she was not breathing while seizing) a day. I have rescue medications I can give as a way of resetting her brain, but they put her to sleep. I was using her rescue medications multiple times a week. We had tried to adjust medications and even changed some, but had no success in relieving her symptoms. She was already on the strongest there is, so our options are very limited. She was recently diagnosed with a bleeding disorder, which only complicates the medications she can take. After speaking with her neurologist, we decided to look in to a VNS. The vagus nerve is located between the coratid artery and jugular vein. Obviously, I had a lot of concern with placing the lead, given the bleeding disorder. We met with a hematologist, who made sure she had everything necessary for a safe procedure. We prayed a lot and really felt that God was leading in the direction of the surgery. I'm happy to report that she underwent surgery on Halloween (10/31/17) and everything went perfect! She is doing extremely well and is basically acting like herself! She had no complications from the bleeding. Also, after speaking with the surgeon, we feel pretty confident that she's already seeing some improvement from the VNS, which they said would take months to see. She has a new kind of device that detects abnormal heart rhythms and will send extra stimulation to help prevent a seizure from happening. She'll have to go back to the hospital every couple weeks to have the machine turned up a little at a time to allow her body to adjust to the stimulation until we reach a therapeutic range. All of that being said, she's taking it like a true champ! She growing up quickly and is full of spunk and life! We are still using her chair and swing. Her PlayPak is a bit small for her but we use some of the pieces to position her so it's still being used!"

Keep up the great work, Alexa!