Sunday, April 22, 2012
Randy Cantwell story The beginning
My Schizencephaly Angel RANDY CANTWELL.
On July 29th 2003 at 11:55a.m. I gave birth to a beautiful baby boy. 6lbs 13oz and 20in long.
He was perfect. He was very happy. Smiled constantly!! I had no clue that 8 short months later I would get news that would change both of our lives forever.
On March 30th 2004 Randy was shaking, not bad but like a shiver. So I thought he was cold, I had told my mom that he gets cold easy. She came in and said "Ang he’s seizing”!! (Keep in mind I was 22 and had never seen a seizure.) So I ask her “why would he be seizing”? She’s already dialing 911. He had a temp of 102 and when we made it to Camden Clark Memorial Hospital, as we walked through doors and he started jerking bad I felt the first wound of what I would find later to be Schizencephaly.
I was hysterical; he had 5 people holding him down to administer valium. I kept asking "what’s wrong with my baby”? I remember the one nurse saying to me “mom it’s not as
Bad as it looks”! I replied “you’re not standing where I am and that’s not your baby"!
Randy had gone to sleep after the valium. They said they were going to do a CT scan. When that doc came back in the room with results, I could tell by the look on his face that it wasn’t good.
He proceeded to tell me that Randy had extra clefts on his brain and that they were transporting him to Ruby Memorial Hospital (WV University Hospital).
That was when my heart sank and I knew I was unable to do anything but watch defenselessly!
Obviously unfamiliar to this disorder he went on to tell me that at Ruby Memorial they could take care of the clefts and be okay. We got to Ruby Memorial where they did an MRI. I was still trying to understand what half of these things were with every minute I felt more and more a sinking reality closing in….Something is very wrong.
On April 1st 2004 Neurologist Dr Margaret Jaynes asked my mom and I to come into a room to review MRI. I was nowhere near prepared and still convincing myself this was a mistake but I took a deep breath and braced myself for what she was about to tell us. The only explanation was the name Open Lip Left Schizencephaly. No matter what this was , at this point I knew they knew they were just as educated in it as I was " are you sure that is Randy’s"? (God please say no) She said "yes". Followed by the only information available. My child more than likely would never live past his first Birthday.
I was given no information on schizencephaly . When I was pregnant with Randys baby sister, I found out that the stroke he had in utero was what caused the schizencephaly , but even still doctors just do not know. Well thats what the ultrasound guy told me.
Seemed like nobody knew anything around here about it! I didnt have internet so I was lost and had no clue what I was to expect. I felt like I had to not only learn how to deal with the fact my beautiful baby that looked so happy and full of life , was given a time stamp by doctors that could not even tell me what this was.
I Only asked for one thing during that time. To give him the most amazing time on this earth I could and let him see everything I did. I was not prepared for anything but loving him like any other mother. Only difference was I was terrified.
Randy’s journey became my priority in Life. I let go of a person I knew prior to his birth , I was now Given a very special role in this world and It was something I was going to go head on with. I had no time for fear or self absorbtion. My life changed and I never realized how good it could be until He made me see it through his eyes.
Everything changed in an instant and I became very aware that I was going into this with little information. At the time of his birth the only information that was given to me by any book or doctor was the same
“A developmental disorder of the brain characterized by abnormal slits, or clefts, in the cerebral hemispheres. Schizencephaly is a form of porencephaly
Treatment for individuals with schizencephaly generally consists of physical therapy, treatment for seizures, and, in cases that are complicated by hydrocephalus, a shunt.
The prognosis for individuals with schizencephaly varies depending on the size of the clefts and the degree of neurological deficit.”
The next few years of Randy’s life were filled with things I never even knew existed. Therapists and Neurologists, Terminology I had never even heard of and it seemed even the hospitals were baffled and usually asked me what Schizencephaly was.
We were back and forth to Appointments in those first years, Constant tests and blood work. It was me that seemed to feel the pain as Randy would tolerate so much still smiling through all the prodding and testing.
I was told Randy Had Type 2 Schizencephaly and that is was it was possible he did have a stroke around 5 weeks Gestation. Although I was concerned over that news the focus remained on giving him a healthy future and beating the odds the doctors were throwing him
He has always been full of smiles and laughter that filled a room. His love for me and trust in me grew so much during this time and I tried hard to communicate and teach him how to respond to his needs. He was frustrated at times and would scream a high pitched squeal when He could not get his words out to me. And that was heartbreaking.
MRI’s that I was shown were so shocking I found it hard to even look but I knew from how much damage there was to the left side of his brain he was a true miracle and a Real angel sent to me for us both to learn from
It was hard to understand his needs and talents this young but I foresaw his smiles and happiness leading him far beyond any expectations.
Because of the damage to the left side of the brain he was clutched fist on the right side of his body from a very young age. It was hard for him to hold objects but he did start working on turning pages in books and discovering his likes and soon his communication started to change. .
The Prognosis randy had been given was not right at all . His life was filled with happiness. He was a living breathing miracle and he was teaching me anything was possible. Now I could begin listening to my own wisdom instead of the people that were trained medically to tell me he would never make it one year …..He was showing them just how wrong they all were.
He was already beating the odds. He had already showed me love like I had never known. and Fear was no longer an issue. I was the proud mama to the most amazing little man this earth had ever seen
Looking back at a few moments in Randy's first few years I have to say there were times that replay in my head.
I wish it was all an easy walk but one Night I had the wind taken right from my chest, That night Randy had to Be transported via life flight. That Night Randy was revived twice and my world stood still.
I knew one of the effects Of Schizencephaly could cause Randy Seizures. But No parent is ever prepared for when they start or how to react to them when they begin.
My first experience with seizures began early on when He would begin spiking high fevers and start convulsing during this time I did everything I could to get answers and it seemed all the tests never came back with anything but more questions.
Randy returned to NICU many times for testing during the first year of his life when they decided to do a lumbar puncture and try to pin point why he was fevering up.
they released us the next day to follow up with Dr Debra Byler in Parkersburg because He continued to get fevers causing these seizures quite often.
Just a few weeks later still no results Randy had to be transported again to Ruby memorial hospital with a fever of 105.
During this ground transport Randy had to be revived by paramedics . This time they did extensive lab work and even called the center of Disease specialists. With nothing to blame the fevers on they once again sent us home.
My Night of Hell.
May 16th 2004 .... (I remember that date because it was my dads Birthday) , that day Randy spiked from 103 tp 105 and was climbing fast. By the time Life flight got to him they had to revive him twice in flight....In Other words My son almost left my life that night and all I could do was feel helpless watching other people, strangers, bring him back
It is a very difficult moment in any parents life when you have to give complete trust to people you have never met to save your child. No one loves them as much as you and the trust we give Dr's and EMT's when you have a sick child is all we have.
....My world felt like it was in slow motion although everything was happening so fast. I just kept asking why this was happening. I felt like I was watching from a distance even though I was right next to him trying to fix him but knowing this was nothing I had ever seen in my life.
It took that trip and my demands to finally get some answers, Randy was placed under observation with fluids and IV motrin as well as tylenol to keep them under control. He was administered Vallium to finally get him out of the seizures.
At that point I was informed these were Febrile seizures. Febrile seizures are convulsions brought on by a fever in infants or small children. During a febrile seizure, a child often loses consciousness and shakes, moving limbs on both sides of the body. Less commonly, the child becomes rigid or has twitches in only a portion of the body, such as an arm or a leg, or on the right or the left side only. Most febrile seizures last a minute or two, although some can be as brief as a few seconds while others last for more than 15 minutes.
The majority of children with febrile seizures have rectal temperatures greater than 102 degrees Fahrenheit. Most febrile seizures occur during the first day of a child's fever. Children prone to febrile seizures are not considered to have epilepsy, since epilepsy is characterized by recurrent seizures that are not triggered by fever .Randys fevers would spike so quickly I never knew when this would happen. and unfortunately it took many trips to the Hospital for them to finally come to the conclusion these were the types of seizures we were dealing with.
With a final answer to what these were we could now focus on how to keep them controlled. Like most children dealing with life threatening seizures we were given Valium to control them and finally could understand how to properly control these before they got so bad.
Every mom thinks they can protect their child from the outside world. We can love and keep them wrapped up in a security blanket of love , But when something happens like a seizure you completely feel helpless. You can watch and pray and beg for help but the truth of the matter is sometimes it truly is out of our hands.
I would never wish that on anyone. I truly watched my child being taken over by an invisible force that I was no match against and my only hope was the Dr's could at least get him to some point where I did not have to live in constant fear of when and where this may happen again.
The night Randy had that life flight was the first time I was given an answer and I knew we were finally going to get on track to control this.
That is why I can close my eyes and relive that day over and over again. Both terrified over the thought my sons hands were in paramedics on that flight and relieved after finding out we now had some answer and could move past this part of Schizencephaly......Now I was ready to face the next battle that laid ahead.
I was ready to see my little man start experiencing life as much as possible and move past these nightmares we once knew. Finally we could focus on Walking, talking and his abilities ...The time had come to Bring Randy home from the Hospitals and constant testing. It was time to celebrate this obstacle he just overcame.