(Levi is in recovery room, post surgery. That teddy bear is like "Buddy" in this story. The teddy bear has a pocket inside his shirt so there device can be in the same place as Levi. Levi is the only person we know that has the VNS device. It was important that he had a friend that was just like him. )
When Levi’s seizures got worse and he started complaining of
headaches, we knew we needed to do something more. Levi has failed 4
medications and all the medications did not stop his seizures. The medications
did stop his motor skills, cognitive ability and communication skills. We lost
our communicative little boy when he was on medication. The neurologist gave us options because Levi
was in pain and his seizures were changing and increasing. We looked into the
VNS surgery and did a lot of research for weeks. We prayed, fasted and prayed
some more about the device. We were told nothing but good results from the device.
We read all the side effects and still felt good about this path. We had a 50%
chance that it would work and from talking with everyone, it was either going
to help or not harm him. Levi had the surgery on Dec. 17, 2018. Levi did well
during surgery and he did well post surgery recovering at home.
(Levi is in a sling as the device and wires heal, his arm was to be "resting". Later we found out that was not needed and they don't normally use a sling after this type of surgery).
We were instructed to use the magnet when we saw Levi in a
seizure. We were already seeing good results with having the device in, in a
short period of time. Levi was sleeping better and waking up happy (something
he literally never did for years). The device was pulling Levi out of his
epilepsy spasms and twitches. Levi refers to the device as “Buddy” and knew
he was helping Levi with his seizures. One day, right before Christmas, I was
wrapping presents in my room and Levi was having a hard seizure and the magnet
was not pulling him out of the seizure, Levi then threw up and was lethargic.
Levi started have different seizures and they were scarier. After a couple of
days of his seizures increasing and Levi vomiting. He started acting different
again. His scary and hard seizures we changing from bearing down to eyes
rolling behind his head, lethargic, chewing, limbs going limp and then passing
out and sleeping for 2+ hours. Sometimes he would groan through the seizure and
sometimes he would vomit. We had to prepare rescue meds a couple of times
because his seizure was hard and long. There was a time when he started shaking
and his limbs were stiff straight. There was another time when Levi had a seizure and
fell off the computer bench and landed on his head on the tile, then passed
out. I am telling you, these were SCARY!
Aaron called the VNS company and explained what was
happening and their response was it was not normal and not heard of, we needed
to call our neurologist. Aaron called the neurologist and then we had a follow
up appointment and Levi had one of those hard and scary seizures. We were told it was a myoclonic seizure. We were
instructed to not use the magnet anymore and see how that works. We did just
that, but then Levi passed out at school and almost passed out on the playground. Thankfully we have the paraprofessional in place so she was there along with his kindergarten teacher to help catch him so he didn't fall off the playground set. Once, he had to get wheeled out to the nurses office because he was so
lethargic from having those hard and scary seizures. We then ended up turning off “Buddy”
and have still seen those hard and scary seizures, sometimes, just not as often. Levi doesn’t talk about “Buddy”
anymore, except when we ask him if "Buddy" hurts. Our neurologist explained that
this side effect of the VNS device that Levi has been experiencing has NEVER
been heard of. There is no medical documentation of this EVER happening. Levi
is literally one in a million. He also has no explanation of why this happened. He suggested that we move onto another option and try to continue to help Levi and try to get the seizures under control so he can stop being in pain, recover and be an active little boy again.
I was so frustrated and mad that we went down this path, why
we felt good about going down this path and what was I supposed to learn from
it. I couldn’t understand why we were led down this horrible path. I was
talking with a friend about this, who has a daughter with special needs, and
she said “You wouldn’t know if this was the best option unless you tried it. You
would always be wondering if it would have helped if you never tried it”. I was expressing my frustration to a close friend about
this and she told me of an LDS talk that was a similar situation of mine. The story
was the Dad and son were out shooting guns in the desert, once the sun went down
they started heading home and couldn’t remember which path to go down as they
reached a fork in the road. They both prayed and felt strongly to go down the
path on the right. As they drove about 400 feet, the road stopped and they had
to turn around and knew the other path was the correct path. The son had asked
his Dad why they felt good about going down the wrong path. His Dad replied
they wouldn’t have known that this was the correct path if they hadn’t went
down the wrong path to begin with.
After hearing about this story and talking with my friends, I now feel like I
finally understand why we felt strongly to get the VNS device. This wasn’t the
correct path for Levi, he did not have a good results from it. After going down
this horrible path, we were led to trying out new medication and hopefully
getting better answers, better results and more help for our Levi. We also MIGHT try the VNS device one more time. The reason why is, there is no one else who has ever had this side effect, if Levi has the same reaction again as he did the first time, he will be put in a medical journal. He will be able to help other children and adults that go down this path too. It will be listed as one of the side effects. He will be able to help others. Right now, Aaron and I are not emotionally ready to try this again. We will have the VNS device removed later this year, if it continues to cause problems and not help Levi. More on that later, as we progress down that road.
For now, please pray for us and Levi. Having been down this road gives me a new perspective on judging others. I had no idea how hard it was to have a special needs child and a child with so many medical conditions. I had no idea how difficult it was on the individual and the parents. We never get a break and Levi has to constantly be watched 100% of the time. I didn't realize that having one child with this complex medical conditions would make such an impact to the rest of the family. Our children currently don't have enough Mom and Dad time. Our time is so consumed with Levi, we don't have enough hours or energy in the day to spend with our other four children. I miss being able to be crafty, creative and working on fun projects. I miss being able to binge watch TV shows and having a clean house most of the time. I miss being able to sleep 6+ hours each night. I miss being able to take a nap when I want and being more relaxed and at one time, I recall I felt bored a few months ago. We just need prayers, love and compassion. This is HARD and we are doing the best we can.
For now, please pray for us and Levi. Having been down this road gives me a new perspective on judging others. I had no idea how hard it was to have a special needs child and a child with so many medical conditions. I had no idea how difficult it was on the individual and the parents. We never get a break and Levi has to constantly be watched 100% of the time. I didn't realize that having one child with this complex medical conditions would make such an impact to the rest of the family. Our children currently don't have enough Mom and Dad time. Our time is so consumed with Levi, we don't have enough hours or energy in the day to spend with our other four children. I miss being able to be crafty, creative and working on fun projects. I miss being able to binge watch TV shows and having a clean house most of the time. I miss being able to sleep 6+ hours each night. I miss being able to take a nap when I want and being more relaxed and at one time, I recall I felt bored a few months ago. We just need prayers, love and compassion. This is HARD and we are doing the best we can.
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