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The decision to put a VNS into Lorianna was made.  The meeting with the surgical team went well.  The testing was done and then comes the day before the surgery.  There are so many things to do the day before.  They are very obsessed with cleanliness, which is to be expected.  The directions given to me said to bathe her with baby soap the night before the surgery and put an antiseptic on her from the neck down.  Then she was to sleep in clean night clothes and with clean sheets that night.  The next morning was another round of bathing and antiseptic before going to the hospital so the decision was made that we would go to Cincinnati the night before the surgery so that we were not as pushed for time the next morning.  So we went to the Country Inn and Suites in Erlanger, KY for the night.  That made it much easier for us because I didn’t have to strip the bed, wash the sheets, put them back on, get up before the crack of dawn to bathe her and do the antiseptic before an hour trip to get to the hospital on time.

Waiting for her appointment

So we got through the evening routine, morning routine and to the hospital about 30 minutes before her scheduled time.  This allowed us to get to where we needed to go and have some relaxation time before the surgery, which made Lorianna feel so much better.  As you can imagine she was nervous about it, but thanks to child life services and an amazing nurse, she remained very calm.  I was able to stay calm as long as I was by her side.  The minute they took her back to the operating room though, it was another thing completely.  I had a complete breakdown, recovered from it and then sat there worrying until they told me that the surgeon was starting to stitch her up.

It was another after that they took me back to see her in recovery.  She was still kind of dopey when I got back there, but perked up when she saw me.  Both the nurse and I told her it was okay to go back to sleep for a while, but she insisted that she didn’t want to.  They got her pain under control and took us to a room for the evening, because they had to observe her for 23 hours after the surgery.  We played games, she painted and did sand art (of course), then we put a movie on and she went to sleep.  The next morning she was as perky as ever, refused pain medication and was ready to go when they decided to release her.  Everything went perfect according to the surgeon and her neurologist.

First meal after surgery

A week later we had to go for a follow up appointment and the first of many times the VNS would be turned up.  We had to go back afterwards every week for a while until we knew how she would handle adjustments to the VNS.  As we quickly found out, she handled it very well and soon the neurologist was making adjustments every two week, then a month, turning it up faster than expected.

Within 4 months they decided to wait and see how the VNS handled the seizures.  So we stopped the appointments and waited.  She had a few small seizures, but nothing major for a few weeks, then a month later she had a major seizure, and they adjusted the VNS some more.  She had another seizure 2 weeks later and they adjusted the VNS again. Another week, another seizure, another adjustment.  The one thing that I noticed the seizures were not as severe and the recovery time was much quicker.  Rather than a couple days recovery time, she was recovering within 1 to 2 hours.  The VNS was helping more than any medication ever did.

Come to our last appointment, the 2nd week of July, and the last adjustment that’s been made.  I’ve noticed such a huge difference in her, she better able to pay attention, doesn’t loose her train of thought as easily as she did and hasn’t had a seizure since the last adjustment.  Today, August 5, 2018, Lorianna is 3 weeks seizure free, I don’t even think she is having the small spacey spells she has had multiple times a day for as long as I can remember.  Our journey continues, but I’m more relaxed today.  The VNS has given us a freedom from seizures that I would have never expected otherwise.  It’s been a long journey for us and the journey will continue, and with it more updates.  But for now, things are going well and she has become a very strong young lady because of all that she has been through.