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Open Your Minds #49: Meningitis And Its Aftereffects (By Johnny Sandusky, aged 11, and his mom) by Karen Lynn Vidra, The Texas Tornado
Friday, June 18, 2004
Rated "PG" by the Author.
A young miracle survivor of meningitis shares his story, along with his mother.
Johnny:
My name is Johnny, and I am 11 years old. I guess, according to my mom, I am very lucky to be alive.
Mother:
My son is now 11, but for a while, we didn't think he would survive. He has been through more hell with his health ever since we have had him, and he has given me so many scares, it's a wonder my hair isn't totally grey by now! [Laughs.] He has muscular dystrophy and epilepsy, and he has been through many crises involving his health, but I think the scariest time was when he was just a year old. That was when he had meningitis the first time.
I remember the incident so well. Johnny had been "off" for several days, and it was as though he was coming down with a cold because he had some "sniffles" and he seemed feverish and cranky, but nothing seemed too abnormal; but then several hours later, when I went to check on him, I found him in a state of delirium--he was moaning--, and when I went to turn on the light, so as to see what was going on, he screamed once, and he went into a seizure, which scared the holy hell out of me. I knew something was wrong, so I had my husband call for an ambulance for our little boy. He was burning with a very high fever, and his color was so pale, and what was disconcerting about this whole mess--besides his seizure, that is--, was that he had a fine, purple-red rash all over his body. When I ran my hand along the back of his neck, he stiffened up, and he went into another seizure. That was when I realized that he had meningitis because I had a child who died of it, and he was acting just like Johnny was before he got sicker and then died.
At the hospital, Johnny was immediately taken to the emergency room, and he was soon on the table, where he was being tended to by an army of doctors and nurses, who were attaching "lines" and tubes and monitoring equipment to his little body, and were trying to figure out the cause of his situation. They worked fast and furious, and I could tell by the serious looks on their faces that whatever was going on with Johnny, the news certainly wasn't good.
It wasn't either: Johnny had an acute case of bacterial meningitis, which is a particularly deadly form of meningitis, especially in small children like Johnny, and his situation was dire at best. He was critically, gravely sick, and there was no telling whether he would survive or not; or if he DID survive, he probably would have some form of mental or phsyical disability.
Johnny:
I don't remember much about my having meningitis, but I guess I was in a very bad way. When I awoke, all I remember was lying in a bed, with my parents crying all over me, and since I really couldn't talk at that time, there was no way I could really tell how scared I was, and how I didn't like the stuff in me, or the thing in my throat that prevented me from talking. The stuff in me hurt, and the doctors and nurses kept doing things to me that made me want to cry, it hurt so much, and I didn't like them messing with my thingie or sticking needles in me.
I also remember that I couldn't see that good, or hear that good, and it scared me. I didn't know it then, but I had a sickness of the brain that made my eyes and hearing go bad, and there was really nothing that could be done to make it better. Ever since then, I have had to wear thick glasses or get close to the tv or put my face close to the page in order to look at a book, and I had to wear buttons in my ears to hear better. I also had problems with my talking: I couldn't talk without stuttering, and it upset me very much. People would tease me about my speech, and it would make me cry every time. But perhaps the worst thing of all was finding out that I couldn't move my one side that good. It turned out that I had a stroke, and it left me paralyzed and weak on the one side.
Mother:
Johnny did, indeed, have a stroke the first time he had meningitis. He seemed to be recovering after he took sick, but then he had a relapse, and his fever shot up to 108 degrees, and he started having seizure after seizure, and it took all the wits on behalf of the doctors and nurses to try to save him. He was extremely sick, and I thought for sure that they were going to lose him. I never was so scared in my life, and I remember calling Bill, asking him to come to the hospital, quick, as Johnny was dying, and they were doing a Code Blue call on him, and they didn't think he was going to make it; and if he DID make it, he would probably be a vegetable for the rest of his life.
Somehow, though, through an unexplained Miracle, Johnny DID pull through; but not without complications: this was what resulted in his paralysis, and his visual and hearing troubles; and now he is a changed child forever. He will never be as he once was prior to getting the meningitis, and he will always have to learn to live with brain damage, seizures--caused by lesions on his brain from the stroke and the high fever he had--, and problems involving his vision and his hearing. He also has some residual "weakness" on his one side, but at least, he can move his one side again; but he will probably never have full normal feeling in that side ever again. So he has had to learn to live with a lot, and now, whenever we see him putting his face close to the computer or tv screen so he can see or holding the book close to his nose so he can read, it is a painful reminder of what has happened to him, and it makes us cry because we remember Johnny as he was prior to getting sick, and he is now a shell of his former self. He has had to overcome much in the way of problems, and life hasn't been fair to him at times; but somehow, he has managed to surprise all of us and fly through the odds with amazing grace and courage.
Johnny:
I really don't remember having meningitis, but I think beforehand, I had a very bad headache, and the lights seemed to hurt my eyes, and I felt bad, but I really didn't think much about it. I guess I thought I was coming down with a cold or the flu or something. But when I DID wake up later, I was surprised to find myself in a hospital, and I did NOT like it ONE bit.
I have since had meningitis a second time, but I remember more about this bout of it because I was older, and I felt HORRIBLE. I had a ferocious headache, worse than the worst headache in the world, and I felt nasty. I also had problems with my eyes: the lights hurt my eyes, especially if they were bright, and my neck felt stiff, plus my back hurt bad, too. I also kept fainting, and when I would come out of it, my body would hurt SO bad it was all I could do to keep from crying! But mommy knew that I was sick, so she got me to the hospital, and I was in the hospital for about two weeks, one of those weeks in the ICU ward, tubes again in me. The doctor said I had meningitis, but it wasn't as bad as the first time; but I was still very sick, and it would probably be a while before I felt like myself again after I got out.
Mother:
Johnny did have meningitis a second time, but it wasn't as bad as the first time because by now, I recognized the telltale symptoms of the disease--stiff neck, severe headache radiating to the front of the head and down the neck and back, extreme photophobia--sensitivity to bright light--, delirium or confusion, convulsions or coma in the later stages, a rash that covers the entire body, and nausea and vomiting--, and when I saw these symptoms in Johnny, I knew better by getting him to the emergency room as quickly as possible, which was probably what saved his life--and spared him from further physical or mental disability.
Thank GOD Johnny didn't have any new symptoms of disability following the second bout of meningitis he had, but he WAS a very sick little boy, and he was in the hospital for over two weeks; and it was at least several months after that before he was fully recovered and felt like himself again.
Still, people aren't nice to Johnny at times because they don't understand all that he has been through, and they think it is fun, great fun, to make fun of his speech, or the fact that he is now hard-of-hearing and legally blind, plus he IS in a wheelchair; but Johnny is a kid, a kid with feelings, and whenever people make fun of him or his handicaps, my heart is stabbed, each and every time, and I wish I could just take him away from all the teasing and redicule and protect him! It wasn't HIS fault that he had meningitis, not once, but TWICE, and people should NOT make fun of him, EVER! This is why, as his mother, it is my duty to protect him, and to teach him that not all people in this world are nice, and that he must learn to brush off their unkind comments, hard as it may be a lot of the time!
Johnny:
Mommy worries too much about me; I am a big boy now, and I can protect myself! But I still don't like it when people tease me; teasing isn't nice, and people should learn to accept ME as a person and see that even though I MAY be disabled, I am a KID first, and I am just like them, more than they may know! All they have to do is get to know me and not act all scared around me!
But I AM a survivor, and not many people can say that they survived meningitis TWICE! I am a Miracle, and if people can't get past that, then that is not MY problem!
I just hope I NEVER get meningitis EVER again! Two times was MORE than enough!
~Severe, blinding headache
~Delirium or confusion
~Severe photophobia (extreme sensitivity to bright lights)
~Convulsions or seizures (later stages or if fever goes too high)
~Extremely high fever (102 degrees or higher)
~Coma or unconsciousness (later stages)
~Nausea and/or vomiting
~Fine, purple-red rash all over body
~Stiff neck or back, trouble bending head forward when head is held to chest
~Extreme pain in back and neck
*If meningitis IS suspected, get patient to Emergency room as quickly as possible, and make sure that you are checked over as well; meningitis is EXTREMELY contagious!! If YOU get the symptoms after caring for a person stricken with meningitis, you get yourself to the Emergency room as well! Quick action is of the UTMOST importance if YOU or the patient is to have ANY chance of surviving the illness!!*
Rovella is a beautiful woman with a cold heart whom blames herself for an unfortunate old family secret that is literally ruining her life. This secret impedes a gorgeous woman from having happiness in her childhood, and throughout her life. Dark sec
Johnny:
