Jerry’s Story

Jerry's Story

Our son Jerry who is the youngest of four, was named after my father in law, the late basketball hall of fame coach Jerry Tarkanian. My father in law had gone home to be with the Lord only two months before our then 5 year old son was hit with an ischemic stroke. We were doing our best trying to cope with all of the ceremonies celebrating Jerry Sr’s life, trying to keep the kids schedules as normal as possible with school and sports that we didn’t realize what was happening to our son before our very eyes. About a week or so before the stroke hit, little Jerry was complaining about being overly tired and wanting to be held more than usual. We were all exhausted, physically and emotionally drained so we just kept pushing him to move right along with his daily activities. Plus he’s the baby in the family so we naturally thought it was due to us spoiling him (as some would say to us) that he wanted to be held more and not want to go to t-ball practice during this time. Gradually over the week he would come home and complain about his legs hurting. I thought that maybe he was going through a growth spurt so I would massage his legs and tell him that it wouldn’t last forever because this was normal and just part of getting taller. A few days had passed and while in our bedroom heading to the bathroom to brush our teeth, he stopped to stare at our wedding photo on the wall while having to regain his balance.  I asked what he was doing and he said to me “Mom, I see two of you and Dad. Why am I seeing two?” I was in a rush to get him and his sisters to school on time, brushed off his comments and told him to hurry up. I attributed this to the fact that his sister Ava had just received a new pair of glasses and maybe just wanted to copy her.

The day he came home from pre-school and requested to take a nap I knew that something wasn’t right…he was not a nap taker. He asked that I hold him and lay down with him, so I did. He had class pictures earlier that day and they also had walked over to the big kindergarten area to learn about what’s to be expected the next year in school. I thought maybe it had just wiped him out from all of the excitement. He woke up a little while later whining and whimpering. At dinner time he had no desire to eat. I wondered if maybe he was coming down with a cold or a flu bug because he never missed dinner.

He fell back to sleep for a short time but was crying when he woke up. We kept him in bed with us and around midnight my husband Danny took him to the bathroom where he collapsed because his left leg gave out from under him. Danny picked him up and thought “WOW he must’ve really been exhausted!” Danny and I took turns trying to calm him down, get him water, hold him and get him back to sleep. Each time he woke the crying got worse. Sometime around 3-4am he was now saying that he was hurting, but couldn’t really explain why? We were asking him basic questions but he couldn’t respond, he was incoherent. His eyes were now glossed over and not making any sense at all. I said to him, ‘Jerry, do you want to go to the hospital,’ and  as clear as day he shouted, ‘Yes!’ We knew as soon as he said that, that he had to really be sick because he hated hospitals.

My husband immediately put him in the car and went to put his seatbelt on, but now his left arm had no strength. He rushed him to the emergency room where the first doctor thought Jerry may have just had a migraine or seizures. While waiting to be tested a second doctor came in, asked him to smile and by this time the left side of his face was now drooping. Unfortunately pediatric strokes are commonly misdiagnosed as either a migraine or a seizure. They sent him in for multiple tests and brain scans at 5:44am to confirm what we were now fearing. I know that it was exactly at 5:44am because I had gone to social media and tweeted out my fear of what was taking place.

Tweet 1: “Our son is getting a cat scan now. His left side of his body is not moving. He is having trouble answering questions..he’s 5..WTF”

At 7:41am I followed up with another tweet with the confirmation from the CAT scan…

Tweet 2: “Our son Jerry had a stroke…he’s 5 and I’m just dying inside”

The doctors had confirmed that he’d suffered an ischemic stroke. We were in shock! Everyone was in shock! We were later told by some of the hospital staff that when “code white” was called the floor froze…pediatric stroke was not common.

Because I had posted on social media my fears about what we were going through at that time, we had every local television and radio station parked in front of the hospital waiting for answers. This was something new for all of us and the community wanted to learn with us. As devastated as we were I’m so grateful for not having to have gone through this alone. Along with the excellent UMC doctors and staff, we had people reaching out to us from all over the city and the world to help guide us on what we should be doing next and what types of doctors our son would now need. This is how we became friends with last year’s Heart Ball honoree’s Larry and Deanne Foster whose son Larson suffered from four pediatric strokes.

Little Jerry’s Papa, Jerry Sr. had had several strokes but not until the age of 81. Our son was healthy and had never had any problems. This was confusing and overwhelming for our entire family to understand. We never thought in a million years that the diagnosis for a young child would ever be a stroke?! This goes to show that this can happen at any age.

Our son was visited by pastors, priests, family and friends. Concerned strangers were even sending him toys and balloons. He was so sick of the needles, he was terrified of them actually and tired of being hooked up to wires. He demanded the nurses and doctors show that their hands were empty before they could even enter his room. Despite the slow, slurred speech he was having to fight through he wasn’t shy about asking questions and he wanted clarification on what exactly was being done to him at all times. We would take turns holding him, sleeping next to him, making sure that he knew that he wouldn’t have to go through this alone.

This kid was determined to get out of there as soon as possible. We were amazed by how quickly he was recovering and within a few days they began occupational and physical therapy. His speech and response time had slowly returned. When they brought in a walker for him his eyes lit up! He knew from watching his Papa while he was still alive that this would be his ticket out. He was more tenacious than ever and demanded that we work with him on regaining his strength nonstop. His motor skills were struggling so he would practice punching balloons and try to play on an iPad. It was very frustrating but he would keep at it.

Not long after he was released he began to complain again about being in pain. We rushed him this time to another hospital in California, thinking we might need a second opinion. They too confirmed he’d had an ischemic stroke (not a new one) but also could not pin point why exactly. Neither hospital could locate the blood clots or any blockage for that matter, but obviously it had to have existed at some point.

A hematologist did find that he is a carrier of what’s called factor V Leiden. This mutation can increase your chance of developing abnormal blood clots, usually in your veins. Most people with factor V Leiden never develop abnormal clots. Both hospitals believe that this wasn’t the cause of Jerry’s stroke so still to this day we are left with unanswered questions as to the ‘why?’ Blood clots do run on my husband’s side of the family. Our family was later tested and it was later determined that me and one of our daughters are also carriers but had never known.

Jerry was on daily injections of blood thinners. He would look down at his cute little legs with tears falling down his cheeks and say how he looked like an old man covered in bruises from all of the injections. He couldn’t take it. We would have to hold him down while he fought us with all of his might to give him the injections. It was a huge relief when he was finally reduced to only half of a baby aspirin a day.

The stroke had hit three areas of the back of his brain with one of areas effecting his vision. The only permanent damage that we are aware of to this day is that his peripheral vision on the lower, left side of both of eyes is gone. It took a little time but with at home rehabilitation he was able to regain full mobility back to the left side of his body.

The weekend he had the stroke, he’d been scheduled to throw out the 1st pitch at the Las Vegas 51s baseball game at Cashman Field where both the home team and visiting Fresno Grizzlies were wearing special uniforms in tribute to his late grandfather. Of course he wasn’t able to make it at that time and this broke his heart.

Throughout all of the confusion he was able to exude courage and strength that I hadn’t witnessed in most adults. He was determined to recover and heal. A few months later he was asked once again to throw out the the ceremonial first pitch on July 4th! We were all amazed. He threw it like a champ…it was a straight bullet to the catcher!

He doesn’t let any of this slow him down. He is a lefty so for little league baseball that means that the ball comes at his right, he’s one of their best hitters! His teacher also shared with us that he’s at the top of his 1st grade class. He loves math, science, technology, Spanish and worship time at school the most. One day he hopes to own a company or become an inventor.

Now knowing what the symptoms are to look out for I look back and I kick myself. Headaches especially with extreme sleepiness, double or blurry vision, weakness or loss of coordination, difficulty speaking or understanding others…there are other signs to watch out for but Jerry had all of these and I was busy…like most parents…sometimes moving to quick and just trying to get through the day.

We began the Tark Toy Drive which collects new stuffed toys that we deliver to the kids in the ICU. Our son was lucky to be surrounded by so many who cared at all times.  We would try to keep things as positive as we could around him. In fact still to this day he randomly thanks us for never telling him that he could have died. Jerry never knew that death was an option…his only option was to heal and to come back stronger than ever! While our son was being treated in the hospital, our family saw so many other children receiving medical care and how families were trying to bring them comfort even as they struggled with their own worries and concerns. Delivering the toys personally has also helped our son with his healing process and to no longer fear the hospital.

His neurologist has said that he will never be able to play certain contact sports such as football, soccer, because of hitting the ball with the head at times, competitive diving due to the head first hitting the water but this doesn’t bother him since he loves baseball and golf. Our son is now 7 and with each MRI we have found signs of healing in his brain. Fortunately Jerry hasn’t had another stroke and we thank God each day that we still have him around. It’s now our job to share and help educate others as much as possible. Please help us spread the message that strokes can happen at any age and to encourage people to talk with their doctors about the warning signs. Thank you!

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