VNS – thetruesuperman

The Real Superman Part XX

By Jeff King

It has been awhile since I have written. I was bogged down working at summer school and studying my last two college classes of the last semester. I just recently finished both. There has been a few things that have taken place since I last wrote The Real Superman. Dylan was scheduled to have the battery in his VNS changed today, which is 8/5/2015. It never happened, because, the surgeon’s secretary would call every few days to move the surgery further. It was originally scheduled for 7:00 AM, but she called us yesterday after calling us two previous time to reschedule and make it later. Now they wanted to schedule it for 2:00 PM, which is actually insane, because, Dylan wouldn’t have been able to eat anything after 12:00 AM this morning. That means he would have to go about 18 hours before he would be able to eat anything. I guess when you’re second class people these surgeons can reschedule you anytime they feel like it. Dylan being possibly two years old mentally, would be very angry if he was unable to eat for that long, and besides, it isn’t good for his health to go for that long. I am considering on launching a complaint against this surgeon, because, it is ridiculous to expect a child that is like Dylan to go that long without anything to eat.

I truly have a problem with the way people treat children with special needs. Don’t get me wrong, it isn’t everyone that does it, but when you’re a parent of a child that has special needs, you notice all the stares and whispers. You notice how some people treat you differently. Just as I was explaining. If we were people that had top of the line health insurance and not Medicaid for Dylan, but perhaps, Blue Cross and Blue Shield; or if we were paying cash, I can bet money that this doctor wouldn’t have continued to put Dylan’s surgery off! It just peeves me! Goddamnit, we are not second class citizens. We matter too! These children matter! We ended up canceling it and rescheduling it for next Thursday. The Secretary told us that if we didn’t reschedule it for next week then we would have to wait until October before we could reschedule it, because the surgeon was going on vacation. Must be real nice? Anyhow, I guess we should be use to this sort of thing by now, since these are the things we have had to deal with since Dylan has been little.

I have written before about how people would say things, for example the woman at the mall who accused Dylan of pushing her kid off the Humpty Dumpty Sliding board. Then there was the woman who blocked the wheelchair access aisle so we couldn’t get Dylan out of the store in his wheelchair. The woman that said that I wasn’t even man enough to make a normal child. Then we went to the MVA to aquire a special parking permit in front of my house, so we can have parking right out in front. We have fought people over this issue. On occasion we have some assclown that decides to park there, but unbeknown to them it is a 500.00 fine to park there. I have actually had words with several neighbors because they parked there. I had one neighbor across from me had someone visiting from Florida parked there. We pull up it is pouring down raining and someone is parked in our spot. I didn’t know who it was. I layed on my horn, hoping someone would come out to investigate and perhaps know who the vehicle belonged to, but to no avail, so I called the police and the officer comes to write a ticket for the vehicle. The lady across the street from me pulls up and ask me what was the problem, I told her that someone parked in my spot. She then says to me, “Do you want me to go get him and make him move?” I replied that I had already called the police. The officer hadn’t arrived as of yet, but she then replies, “Well that is unneccesary!” I did’t know she knew this person, but she began to cuss me out like it was my fault that this ass hat parked in my spot! My daughter began to yell at her, and began to threaten her. That is when the clown that had parked in my spot finally came out of her house and walked across the street. He asked me what was the problem and I explained that I have a permit for the parking space and that it is a 500.00 fine to park there. He said he didn’t even see the two great big signs that read “PERMIT PARKING ONLY”, which also has a number that is affixed to my driver’s side windshield. I replied, “Can you read?” Which he took offense with me. That is when the police officer pulled up. I explained to the officer what transpired. I told the officer if he moves I am not worried about if he gives him a ticket. I just want my parking space so I could get Dylan out of the car and into the house. This is the kind of issues we have had to deal with. One time some Jack hole had parked there and I called the police. The officer that came actually asked me what I expected him to do about it. I informed him that they usually write a ticket for the violators. He told me that he wasn’t comfortable doing that and to park somewhere else. I promptly took his name and badge number and told him that I was calling for another officer. He was a real smart ass. He said, “Go right ahead, they will just send me back and I am not writing a ticket, I don’t have to.” Which really pissed me off. The woman who parked there came walking down the street and the officer asked if the car was hers and she said yes. He said, well you can’t park here. She said “Oh I am sorry, I didn’t know that?” She got in and drove off. Then the officer says to me, “all taken care of” Like he did something. I quickly replied, “Yes, but no thanks to you.” I will be in touch with your supervisor.” I called his supervisor the next day and was assured that I wouldn’t have another issue with an officer writing a ticket, because that is his job.

These are the things we have to deal with. I also explained the stares people give to Dylan. Like he is some kind of freak. He yells out, because he cannot speak. We expect children to stare, but then we have grown ass people rudely stare. We hear them whisper and occasionally laugh. One time, me, Dylan, Terri and my mom was in Wal-Mart and I was walking ahead of them. Terri was pushing Dylan in his chair and Dylan began to scream, it is an impulsive sensory thing that he does. Most people pay no mind to him, because most people no better, but as they’re walking along, Dylan is screaming. I was up ahead, because I was checking on something. Dylan let out an ear piercing squeal there was a lady directly in front of me she looked up and said, “Geese, shut that kid up!” I said, “Excuse me?” and she laughed, “I said, shut that kid up!” I was angry and I yelled at the woman, “What in the hell is wrong with you lady? That’s my child you’re talking about and he is Autistic!” She turned horribly red, “Oh I am so sorry, I didn’t know? I work with kids like him.” She replied. “I sure hope the hell not!” I said furiously “Because I sure feel sorry for them! You intensive asshole!” I added. By then Terri had overheard what was going on and she immediately reamed the woman out as well. Suddenly my 65 year old mother came careening down the aisle with a cart, “What did that bitch say about my grandson!” she yelled. I immediately calmed her down we got what we came to get and quickly left the store without further incident.

These are the things that saddens me. I often wonder is how Dylan will be treated when we’re no longer around and sometimes I feel hopeless; however, there remains a glimmer of hope. We were out at a mall yesterday and me and Dylan sat on a bench waiting for Terri to finish in Torrid. This little boy escaped from his mother and came running over to wear we were sitting. I was on the bench, but Dylan was in his wheelchair. The little boy bean to rub Dylan’s hand and say hi. His mom came over and said, “Did you tell the little boy hi?” they both smiled at us the young woman said hi to me and asked me how I was doing? I told her good thanks. She smiled and walked away. It is these type of things that gives me hope. We have people hating one another because of race issues. We have people hating people because of religion and politics. It seems as if the world is seriously going to hell and we are all on a one way dead end road towards doomsday, but there is yet hope. The little boy that came up to Dylan was probably about three-years old and an African American. He didn’t notice Dylan’s skin color, or his disability, he noticed that Dylan was a kid, just like him. That is truly love and that’s the kind of love that produces hope. (To be continued.)

The Real Superman Part XIII

By Jeff King

December 22nd, 2011 was finally here. We took Dylan to his surgery appointment early that morning at Johns Hopkins Children’s Center. We had to be there by 6:00 AM to get him prepared for the VNS. My wife and I was quite nervous about this procedure. We had researched it and we knew that he was at the top hospital in the world. With the top neurological surgeon for children, George Jallo. Who is also the Clinical Director of Pediatric Neurosurgery and a Professor of Neurosurgery. This guy is the best in this field and he has the credentials to prove it. We were still very worried. We prayed and waited with Dylan until the anesthesiologist showed up. He had his own team that he brought with him. They assured us that Dylan was in good hands. Of course we were concerned after what Terri had went through, but this was the hospital that I had taken her to. This was where the surgeon who had put her back together once practiced at. He had moved on to another hospital, but he had designed the surgery that saved my wife’s life Dr. Charles Yeo was a miracle worker and we were sure that Dr. Jallo was cut from the same cloth. He worked at the same hospital. The hospital that people from all over the world come to when they want to get well! Dylan was in good hands indeed.

The surgery took about three hours and the Doctors assistant kept us informed throughout the surgery. This is definitely a first class hospital and they deserve every award they receive.

After about three hours the Doctor came out and told us himself that everything went well and that they were getting ready to transfer Dylan into recovery. It took about a half an hour before a nurse came out and got us and took us to Dylan. He was out like a light and we examined is tiny body. He had a scar that ran up the left side of his chest to just under his chin. It looked like someone had cut his throat. It was a little disturbing looking to us. Dylan was out for about an hour before he finally woke from his drug induced slumber. We thought he would wake up crying or screaming, but, no, he didn’t. Like some sort of Friday the 13th movie Dylan sat up like Jason Voorhees. He was ready to get up and go. We gave him some juice and he drank it down like it was nothing.

Almost immediately we noticed a difference in Dylan. The first few weeks we almost had the old Dylan back. He was more alert and for the first time in over a year he was seizure free! Our thoughts were, “finally, we have found the magic bullet. This would surely be the golden cure that we were looking for. We took him to Dr. Rubenstein over the next several weeks so that he could adjust the stimulator. He was amazed how well the surgery went and how well Dylan was doing. He witnessed Dylan trying to communicate again. He wasn’t talking yet, but he was definitely more vocal and we truly believed that soon, he would talk once again. Finally our son had returned. How I missed that boy.

Dylan was more animated than he had been in over a year. He was walking around and moving at will. He began to play with some of the toys that had been lying dormant for the past year. We were definitely witnessing our second miracle; the first one being the day he started running. What we didn’t know that this too was only a temporary fix and that the seizures would be back with a fiery vengeance in about 4 months. (To be continued.)

The Real Superman Part XII

By Jeff King

We began hearing a term called VNS. This procedure was supposed to be working miracles for people who suffered from intractable epilepsy. I didn’t even know what VNS was, let alone how it was done, so I began to research it. I went to the Epilepsy website and began to read about this new and innovative procedure that was helping tens of thousands of people who suffered from epilepsy. They termed this new procedure as, “the pacemaker for the brain” (Schachter, 2013). This device is placed under the skin on the left side of the chest. The wire runs to the Vagus nerve which is a part of the autonomic nervous system. This nerve controls functions of the body which are not under voluntary control. The neurologist sets the devices impulse to send a small jolt of electricity to the Vagus nerve. In theory this can stop a seizure from happening. You are also given a magnet that you can use for any onset signs of seizures, or when a seizure comes on. You placed the magnet over the stimulator outside the chest and in theory, it stops the seizure. You can learn more about it at http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns. This sounded wonderful, a very promising weapon against seizures. The more I read about it as well as testimonies from patients and parents and family members of patients the more I liked it. My wife had also checked it out and we were determined to talk to Dr. Rubenstein about it.

On Dylan’s next appointment to see him he asked us how everything had been going for Dylan, we explained how Dylan just laid around very lethargic and was continuing to have up to 40 seizures a day even on the medicine. We asked him to help us order a special wheelchair for Dylan, because, I could no longer carry him around because, he was getting so heavy, plus he was dead weight. He agreed and put a request into Medicaid. He started talking about maybe introducing a new medication into the mix. Terri and I quickly cut him off and almost in unison said that we wanted to try the VNS on Dylan. He listened patiently and then said, “I couldn’t agree more.” I am glad that you both are very pro-active in Dylan’s health and you both are well informed. I definitely believe that he is an excellent candidate for this procedure.” We talked a little more about it and he gave us all the details about what to expect and what side effects could also occur with this procedure. We all came to the agreement that Dylan would be fitted with the VNS and we began to plan the date of his procedure. His surgery was set for December 22nd, 2011. Which was about three months away.

Medicaid had approved him for his wheelchair, which was great for us, because now we were able to go to the store and take Dylan in with us. Before that I would sit in the car with him while Terri went inside to do the grocery shopping, which was okay, but I believe it was better if Dylan was able to go into the stores too. I mean his life consisted entirely of laying around having seizures. He no longer watched any TV. He was just there. It sounds cold and harsh, but that’s the best way I can describe him. I can tell you as a father, I cried many tears as I watched him slowly disappear his whole personality was vanquished. It was a very sad and horrible existence that he was living. I thought about the Metallica song “One” “Darkness imprisoning me All that I see Absolute horror I cannot live I cannot die Trapped in myself Body my holding cell” (James Hetfield Lars Ulrich, 1993).

I thought how sad, his body was his holding cell! This made me weep hot tears of sorrow ran down my face! I was sure hoping that the VNS would deliver my son from that darkened abyss that he disappeared into.

When we got his wheelchair we decided to go shopping at our local grocery store. I got the chair out of the trunk and set it up. I got him out of the back seat and placed him in his chair. We went grocery shopping. He just sat there impassively, but at least he was out and about, so that was a good thing. We finished shopping and we go outside. I was pushing Dylan and Terri was pushing the shopping cart. There was a car blocking the handicap aisle that was in front of the store. Terri yelled out, “How rude!” The driver of the vehicle pulled up out of the way, but started cussing us out. I told the lady that she didn’t want to mess with my wife and that she was illegally parked there anyway. She got out of her car, but stood inside her car door and hurled insults at us. Then she says to me, “You’re not even a real man, because you couldn’t even create a whole child!” Man I was enraged, but Terri was twice as angry. She wanted to go after this vulgar extremely evil women, but she didn’t. She just walked away! What an offensive wicked thing she had said! I am not going to lie, I cursed her and said that one day, that she would reap what she had sown. She reaped hate she will definitely sow that same hate! This was just another of the many incidents we would have along this journey. The hate and the evil that spews from the mouth of people against people with special needs, children with special needs! I never hated anyone in my entire life, but as God is my witness, if that woman would have choked to death on her hateful words, I would have begun to cheer right then and there. Don’t get me wrong, I really don’t wish those type of things on anyone, but it was very hurtful. It just made me hurt for my son and I just couldn’t believe this woman would say such an ugly thing about a child. (To be continued.)