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Jodi C.
Jodi C.
Survivor

Tracey E.
Tracey E.
Survivor

Tyler S-A.
Tyler S-A.
Survivor

Larissa B.
Larissa B.
Survivor

Heather H.
Heather H.
Caregiver & Family

Kelly P.


Family & Caregiver

Pediatric Stroke

Long term effects of Pediatric Stroke

In 1997, my husband I and became pregnant with our first child. We were so excited and my pregnancy progressed as it should although I was plagued by migraines and my blood pressure was high almost from the beginning.

In the last weeks of my pregnancy, I noticed small but alarming changes that were confusing to me. At one of my appointments, I explained that things just didn't feel "right". The baby had slowed down and I just felt off. I couldn't put my finger on it, but I was sure that something was not quite right. My OBGYN, humoring me, did a stress test on the baby and I was assured that everything was normal. I called his office later that week and explained that I still didn't feel that things were ok. Again he humored me and brought me in for another stress test. Given the thumbs up again, I felt a little silly but pushed for more than a stress test. Lucky for me, the office next door housed an OB that specialized in high risk pregnancies. The doctor conducted an ultrasound that revealed that my amniotic fluids were low and requested that I come back two days later for a follow up ultrasound as a recheck. I left the doctor that day feeling relief that I wasn't crazy but unsure of what low amniotic fluid meant. In the days were we couldn't find the answers to EVERYTHING on the internet, I tried to be clam and trust the doctors.

At my follow up ultrasound on Monday, it was discovered that the amniotic fluid levels had dropped significantly more and I was sent to the hospital to have labor induced. Thank God I had listened to my body and intuition and pushed my doctor for more in depth testing. As my husband and I went across the street to the hospital, I was nervous but elated that my beautiful baby was on the way!

I was admitted and hooked up to IV Pitocin. Contractions started quickly but soon Monday was behind us. Tuesday came and went. I was exhausted. Two days of heavy contractions, no real progress. I never really questioned why the doctor didn't call for a cesarean. Finally Wednesday morning, January 29, 1998 my beloved Bryce was born. I was exhausted but he appeared fantastic! The nurses took Bryce to the nursery so I could sleep. That afternoon after they brought Bryce back to us, I talked my husband into going home so he could sleep too.

Sometime in the middle of the night, a nurse came to check on us and told me that Bryce's color was off. After all that I had gone through I brushed her off. But shortly after that, his color went gray and I went crazy. I was yelling and pushing the nurse call button. They came and took Bryce away. Hours later, I still hadn't heard anything about Bryce and the nurses weren't telling me anything other than he was in the NICU and getting testing. Finally dawn dawned and I called my husband. He rushed back to the hospital (angry of course that I hadn't called earlier) just in time to get the news that Bryce was having seizures. A LOT of seizures. He was having a CT, an MRI and blood work.

Later that day, we finally were able to see Bryce in the NICU and were startled to see that he had tubes and wires all over him. We were advised that he had a stroke and that he was suffering from seizures as a direct result.

The next year, after Phenobarbital, countless tests, doctors, clinics, therapy... Bryce was given a clean bill of health with only some residual vision problems and an assurance that Bryce's stroke wasn't a big deal and we can move on like a normal family with a normal kid.

Fast forward 15 years. Bryce and my husband come home from a Labor Day weekend hunting trip on Sunday. Monday morning, my husband wakes up to weird sounds from Bryce's room and he finds him eyes open but completely unresponsive and his breathing raspy. I suspect he's had a seizure and instruct my husband to call 911. EMS whisks him away to the hospital with me in tow. In my town, neurologist are far and few between and he isn't seen in the hospital by a neurologist. He is discharged with the instructions to follow up with the only pediatric neurologist in town.

A month later, I still haven't been able to get him in to see the doctor. In fact, the doctor's office still hasn't even scheduled an appointment claiming they needed this or that. I was tired of calling every other day and at this point, they weren't even returning my phone calls anymore. I gave up. He hadn't had another seizure and I was fed up. That shames me.

January hits. It is Bryce's 16th birthday and we've just gotten home from dinner celebrating. We have a terrible argument. Now every family argues but Bryce is being irrational and everyone goes to bed angry. The next evening, everything is back to normal and Bryce and my husband are having pizza and watching TV. I've gone to bed early. My husband calls for me in a panic because Bryce is having another seizure only this time he has food in his mouth and is choking too. My husband is on the phone and I'm doing everything I can to get the food out of his throat. After failed attempts at the Heimlich maneuver, he isn't breathing and I'm giving him CPR. By the grace of God, the food is expelled and he begins to breathe again just as paramedics show.

This time in the ER and after another seizure in the hospital, we consult via Skype with a neurologist in Washington State (we live in Reno, Nevada) and he puts him on anticonvulsants. And FINALLY we have an appointment with this doctor as he comes to Reno several times a month.

At Bryce's first appointment with the doctor, we get to see a picture of his brain for the first time and we are shocked. The stroke which we were assured was "no big deal" is huge and had taken 1/6th of his brain. In an adult, a stroke this size would have had a devastating impact including speech and motion impairment. Because he was an infant at the time of the stroke, he brain was still growing has compensated for the injury.

The doctor is amazed to see that Bryce is indeed a normal kid. No speech problems, no limited motion although he does show us that he has minimal right side weakness. And now seizures.

Right now, we are dealing. Tests that should have been conducted 15 years ago are being done. We are finally finding out if he is at risk for additional strokes and are looking for a cause of the original injury.

We look back now and see that issues that we chalked up to regular boy things may have been intensified by his frontal lobe injury. The frontal lobe is associated with reasoning, planning, emotions and problem solving.

Bryce is an amazing kid. He hasn't let this slow him down or bring him down. Although he's had to take a step back in his path the independence, he is coping amazingly well. I am so proud of our son.

 

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