What Next?

So, we just returned from our trip to Washington DC which was great. Well, the two seizures Parker had on the trip were less than great; but, other than those events, it was great! Fortunately, we had made our way to Charlotte for a VNS (vagus nerve stimulator) adjustment on the day before our trip. Unfortunately, we had the need for the side trip because Parker had several seizures just before leaving for DC. His doctor didn’t want to go back up on the meds and frankly, neither did I. He gets so drugged that he is no longer our child, he is more of a shadow of himself. We almost always see an immediate difference when going down on medication because he acts more lively and is much more interactive. In any case, we did make the trek across to get the adjustment made before leaving on our vacation and we were hoping to be seizure free for a few days.

The VNS was set to go off more often and the strength was also increased. Briefly, the VNS is located in the upper part of his chest and it looks like a pace maker. So as not to cause too many problems, it is initially set very low so it is barely felt. On this last resetting it was set to go off every 1.8 minutes and for about 10-20 seconds. It is hard to remember all the specifics because we have been going back for frequent adjustments ever since the surgical implantation in March. When it goes off, it sends a signal to the vagus nerve through a wire that goes from the device to the vagus nerve. The other part of the adjustment deals with how strong the signal is and that was also increased. Besides regularly going off every 1.8 minutes, we were supplied with several magnets for swiping. If Parker has a seizure, we swipe the magnet over the device and it is supposed to stop the seizure. As of now, it has not stopped a seizure. I hope that when we get to a strong enough signal, it will stop them. In fact, that is the goal. We are striving to keep him from having seizures and if one does start, we just swipe and stop it.

On our trip, as I said before, he had two seizures that were pretty minor. They were inconvenient and they wiped him out for awhile, but, they were fairly small in strength and in time. Once again, the magnet swipes didn’t stop them, but, maybe the VNS kept them small. Who knows? Maybe the neurologist does. That will be a question to ask at our next appointment.

A couple days after getting back from our trip, Parker had another seizure. This one started small and grew bigger and lasted longer than most of his past seizures. The magnet was swiped two times and it did not stop the seizure. Once the seizure got to the 2 minute mark, we pulled out the Diastat, the rescue medicine. We have only had to pull it out once before and again today. We were directed to get the Diastat out at the 2 minute mark and use it at the 3 minute mark and if it is not stopped by the 5 minute mark, call 911. We are so fortunate to not ever have needed to go this far. We know others that have had to go there and we are happy and so grateful to not have ever been to that place.

So, here we are once again in need of a trek to Charlotte. I really shouldn’t complain about a drive. I just get a little weary of the 3 hour + round trip. Yeah, I know, it is time to woman up and stop taking it like a man. Sorry guys, sometimes you all can be a little whiny about these kinds of things. With the long weekend, I had a choice of shooting out the door and getting there by the skin of my teeth on a Friday by 5:00 or waiting until Tuesday. I chose to wait. Okay, I didn’t want to fight traffic and push myself. After our trip, I am exhausted and I am sure that after a little rest this weekend, I will be able to woman up and deal with the issue. And, just after I made this decision, I found out that Parker’s physical therapist had to cancel his session for Tuesday. So now I don’t have to cancel and he can go to school for most of the day and get the VNS adjusted and I will be rested and ready to go! Sometimes things just work out!!

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About Lori Linn

Besides writing, Lori has been an Actress both on stage and in film, is currently a member of SAG and AFTRA, and is a credentialed teacher as well as her full time job as a mom.
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