In the month of September 2017, there were warning signs that countless missed. Dominic was suffering from headaches at school. Our active boy that would do anything to ensure he was playing outside with friends during recess or PE was frequently missing those fun activities. He was in so much pain from headaches that he would spend his time in the nurse’s office at school instead of being a part of the activities he loved so much. When we would find out about it after school, he would usually be feeling better.
Dominic’s test scores plummeted after the summer, even with summer tutoring. His processing skills were a struggle. He was crying at the drop of a hat and our patient guy was frequently losing his cool with his siblings and with us. We had many questions: Is he not getting enough sleep? What has his nutrition been looking like? Is school just over his head and too hard for him this year? Does he have a learning disability that is impeding his progress? Is he having friend issues? Is he being hurt by someone? Or is there something going on in his brain that we need scans for?
All of these questions brought us to our pediatrician. Dominic’s regular doctor was retiring, so we saw a new doctor on September 26th. We asked all of these questions at this appointment. His reflexes and vitals were checked and the conclusion was that the headaches must be attributed to the academic struggles he was experiencing and was given a recommendation to get him to bed earlier and to ensure he had well-balanced meals. We left with a prescription to give him Tylenol at school as well as flu shots for all three kids. We left hopeful that he was alright as the doctor said, but our guts told us there was something more that was going on, we just didn’t know what.
Well, eight hours later, at 1:00 in the morning things began to take a turn for the worse. Dominic came into our bedroom sobbing and inconsolable, which never typically happened with our son. Between crocodile tears he was slurring his words, repeating words and phrases, saying friends’ names and repeating the word homework. As we were trying to make sense of our little guy, with knots in our stomachs and looking at each other with confusion and fear in our eyes, we concluded that he must be experiencing his first night terror. What we didn’t know is that our baby, at that moment, very unbeknownst to us was having his biggest stroke. Not knowing that it was even possible for children to have strokes, we had him sleep with us in our bed. It was a restless night. One with him moaning and kicking until the morning hours.
Like many other parents of children with medical emergencies, the day of September 27th will be one that we will never forget. We got ourselves and our two other kids ready to go to work and school. We allowed Dominic time to sleep in our bed until 7:15, an hour after his natural alarm clock usually has him awake. When trying to wake him up, we discovered that he had lost bladder control...which never happened to him even as a toddler. He wouldn’t open his eyes. He wasn’t able to respond. When trying to get him to walk to take a shower he was slouching and unable to move his right side. With our son’s limp body lying on our bathroom floor and our heart’s aching with fear, we called 911 immediately.
When the medics came in our home to check Dominic out, with our seven-year-old daughter, one-year-old son, and two dogs never leaving Dominic’s side, the medics said his vitals were fine, but that we may want to get him checked out at the hospital. There were questions about a possible allergic reaction to the flu shot. We went to the closest hospital to our home at the Valley Medical ER where he got a CAT Scan and a subsequent MRI hours later. Our extended family was called and stayed in the waiting room...hoping for the best and praying.
Hours later, the ER doctor on staff came into our dark room when all the while Dominic was still unable to talk, move his body or open his eyes. While we were holding Dominic’s hands, the doctor’s words are fused in our memories. He said: “I am so sorry. The MRI shows that Dominic has suffered multiple strokes. He has most likely been suffering these strokes over a couple of week timespan.” With knees weak, hearts pounding and consequently feeling very queasy, our response was: “Strokes? What does that even mean? He’s going to get better, right?!” To which he responded: “This is most likely as good as it’s going to get.” Once that doctor left and we were left alone with our son who we were hopeful was still taking things in, yet at the same time very fearful that he heard that he was not going to get better and fearing he would believe that, we leaned over him... praying... letting him know that we loved him, we knew he was strong; that he can fight this; that he will get better; and that we believed in him.
We were then transferred to where we would soon consider our home away from home, filled with the folks that we credit for saving our son’s life: Seattle Children’s Hospital. We were assured that if we were going to be anywhere and under anyone’s care, then this is the place to be. This is where we learn that our amazing doctor, Dr. Amlie-Lefond, a national leader in pediatric stroke specialty, comes in. She had already been in contact with the Valley ER and had been guiding Dominic’s care before we had even left.
Upon arrival to the Children’s PICU our angel nurses were not only caring for our son, but they were also caring for us. With the words that the ER doctor said still ringing in our ears, our nurse Cara ensured that this was the place to be and that they were going to take the absolute best care of our son. She also stressed that if we were going to be anywhere in the nation, she believed this was the absolute best place and our son was under the absolute best care by Dr. Lefond and the amazing team of neurologists and other staff.
The night of September 27th into the wee morning of September 28th was filled with fear, tears, panic, exhaustion, hope and faith… along with amazing nurses, brilliant doctors, social workers, tests and machines. There were countless tests that were performed on Dominic until 3:00 in the morning. Some of them included an MRA to check his arteries, an EEG to test to check for seizure activity, he was also receiving frequent neural checks and labs. He even had to have a lumbar puncture in his spine to rule out meningitis which also turned out to be clear.
The question still remained: What was causing our seemingly healthy child to have multiple strokes at the age of 9? To further assess the situation, an angiogram was completed several hours later to get a closer look at his vessels into his brain.
The results to the angiogram, the MRI, MRA, and tons of other assessments, allowed our neurology team to deduce that he had what they call a dissection of his left vertebral artery which then caused a larger clot to form in the basilar artery. As the body tried to break down the clot, parts of the clot would break off and cause strokes in three different parts of his brain, making a total of seven individual strokes. Although we have learned from Dr. Lefond that it is very difficult, if not impossible, to date a stroke, based on Dominic’s mood changes, headaches and processing changes, he most likely was suffering from these strokes for the past couple of weeks, until the largest of the strokes sent us to the hospital.
We also learned that Dominic was born with posterior communicating arteries which quite literally saved his life. Only 30% of the population has this which allows more collateral blood flow to the brain. Because he has these it allowed enough blood flow to the damaged area in order to not be catastrophic with irreversible damage. If he was not part of this 30% doctors have feared that he would no longer be with us. The strokes would have taken his life. What is further fortunate about our situation is Dominic's age and neurological plasticity. His brain can recover over time, reroute and create new paths and we are hopeful and expectant for almost a full recovery. And while the journey is long, we are along for the ride and supporting our guy every step of the way.
We were in the hospital for 31 days. Every day was filled with doctors, nurses, therapists, social workers, Child Life staff and other amazing hospital staff members. Our family, church and close friends also never wavered. We had countless visitors, gifts, prayers from people around the world, and notes of encouragement from students at school, members of our church, as well as many supporters of our family who we didn’t know would soon become part of our circle.
That’s when Kaysee with the Pediatric Stroke Warriors came into our lives. The Pediatric Stroke Warriors changed our story. They helped us see that we were not alone. Our eyes were opened to a whole community that we didn’t even know existed. She is a big reason why we will continue sharing our story and advocating for all children and families living through pediatric stroke. Kaysee also sent Dominic a Brave Box filled with gifts that met his interests and needs which also let him know that he was not alone and that there was a whole group dedicated to kids just like him. He felt so much joy and empowerment after opening this special box. We were also gifted through the Warrior fund with gas cards and gift cards for groceries too…which is a big relief for a family whose lives have just been turned upside down.
After leaving the hospital with our son in a wheelchair who was just starting to use a crutch, who was struggling with managing his emotions, who was overwhelmed by the cognitive demand of daily life, we dedicated our time to reacclimating our children with life all together once again at home. Over the past six months since then we have spent hundreds of hours in the car going back and forth to therapies at the Seattle Children’s South Clinic (thank goodness for great Harry Potter audio books!), we have gotten back into a full-time school schedule, we have taken many steps forward and also lost momentum, all the while we have thanked God for every moment of every day.
Dominic’s life is back to normal in so many ways but each day we are adjusting to a “new normal” way of living. Dominic will never be able to try out for the school football team, he will never be able to wrestle, or participate with his friends in a neighborhood boxing match. Try telling a 10-year-old he can never jump on a trampoline, go in a bouncy house or ride a roller coaster ever again for risk of damaging his arteries and having more strokes. Many of his young dreams are shattered because of this. But one thing we keep going back to and one he can keep depending on his is his flexibility and resiliency. Just like the neuroplasticity his brain is going through, Dominic is creating new pathways in life to do the things he loves but in different ways.
Throughout this journey we have learned a lot about love, about who we are and about how we want to live our lives. Some of our story might sound tragic, but we choose to look at it as a blessing. We have learned many things on this journey and continue to as our son continues to grow, develop and heal, such as:
- We learned that God has a plan and to trust full-heartedly in His plan;
- How to truly live in the moment;
- How to rely on others;
- How to encourage others and how to receive encouragement;
- That the therapy pool is seriously so warm;
- That the hospital pizza is seriously delicious;
- That everyone we worked with at Seattle Children’s and Pediatric Stroke Warriors are true saints on Earth;
- That we have the most incredible support team
- That life is just one big roller coaster ride… just hang on tight, lean in the turns, go with the flow, live in the moment and love the ones you’re with;
- We learned that generosity of spirit and the willingness to share our own ‘gifts’ freely with others is such a blessing;
- We learned that Dominic’s strokes have changed us all. That we will never be the same. We are closer, we are braver, we are stronger, we are mightier and we love each other fiercer than we ever have before;
We were given a valuable lesson from a volunteer at the hospital from when her son was at Children’s years ago: That even though we generally look at ourselves as “givers” and that it is hard and awkward to receive charity from others; she said that without receivers in the world, there would never be givers. We will all be in the receiver role at different times in our lives, and it is our job as receivers to allow the givers to do what fills their hearts – to give. We are walking examples of being at the hands of the kindness and generosity of our friends, our family, of Seattle Children’s Hospital and the Pediatric Stroke Warriors…Our hearts are full…and we hope yours are too.
Dominic’s test scores plummeted after the summer, even with summer tutoring. His processing skills were a struggle. He was crying at the drop of a hat and our patient guy was frequently losing his cool with his siblings and with us. We had many questions: Is he not getting enough sleep? What has his nutrition been looking like? Is school just over his head and too hard for him this year? Does he have a learning disability that is impeding his progress? Is he having friend issues? Is he being hurt by someone? Or is there something going on in his brain that we need scans for?
All of these questions brought us to our pediatrician. Dominic’s regular doctor was retiring, so we saw a new doctor on September 26th. We asked all of these questions at this appointment. His reflexes and vitals were checked and the conclusion was that the headaches must be attributed to the academic struggles he was experiencing and was given a recommendation to get him to bed earlier and to ensure he had well-balanced meals. We left with a prescription to give him Tylenol at school as well as flu shots for all three kids. We left hopeful that he was alright as the doctor said, but our guts told us there was something more that was going on, we just didn’t know what.
Well, eight hours later, at 1:00 in the morning things began to take a turn for the worse. Dominic came into our bedroom sobbing and inconsolable, which never typically happened with our son. Between crocodile tears he was slurring his words, repeating words and phrases, saying friends’ names and repeating the word homework. As we were trying to make sense of our little guy, with knots in our stomachs and looking at each other with confusion and fear in our eyes, we concluded that he must be experiencing his first night terror. What we didn’t know is that our baby, at that moment, very unbeknownst to us was having his biggest stroke. Not knowing that it was even possible for children to have strokes, we had him sleep with us in our bed. It was a restless night. One with him moaning and kicking until the morning hours.
Like many other parents of children with medical emergencies, the day of September 27th will be one that we will never forget. We got ourselves and our two other kids ready to go to work and school. We allowed Dominic time to sleep in our bed until 7:15, an hour after his natural alarm clock usually has him awake. When trying to wake him up, we discovered that he had lost bladder control...which never happened to him even as a toddler. He wouldn’t open his eyes. He wasn’t able to respond. When trying to get him to walk to take a shower he was slouching and unable to move his right side. With our son’s limp body lying on our bathroom floor and our heart’s aching with fear, we called 911 immediately.
When the medics came in our home to check Dominic out, with our seven-year-old daughter, one-year-old son, and two dogs never leaving Dominic’s side, the medics said his vitals were fine, but that we may want to get him checked out at the hospital. There were questions about a possible allergic reaction to the flu shot. We went to the closest hospital to our home at the Valley Medical ER where he got a CAT Scan and a subsequent MRI hours later. Our extended family was called and stayed in the waiting room...hoping for the best and praying.
Hours later, the ER doctor on staff came into our dark room when all the while Dominic was still unable to talk, move his body or open his eyes. While we were holding Dominic’s hands, the doctor’s words are fused in our memories. He said: “I am so sorry. The MRI shows that Dominic has suffered multiple strokes. He has most likely been suffering these strokes over a couple of week timespan.” With knees weak, hearts pounding and consequently feeling very queasy, our response was: “Strokes? What does that even mean? He’s going to get better, right?!” To which he responded: “This is most likely as good as it’s going to get.” Once that doctor left and we were left alone with our son who we were hopeful was still taking things in, yet at the same time very fearful that he heard that he was not going to get better and fearing he would believe that, we leaned over him... praying... letting him know that we loved him, we knew he was strong; that he can fight this; that he will get better; and that we believed in him.
We were then transferred to where we would soon consider our home away from home, filled with the folks that we credit for saving our son’s life: Seattle Children’s Hospital. We were assured that if we were going to be anywhere and under anyone’s care, then this is the place to be. This is where we learn that our amazing doctor, Dr. Amlie-Lefond, a national leader in pediatric stroke specialty, comes in. She had already been in contact with the Valley ER and had been guiding Dominic’s care before we had even left.
Upon arrival to the Children’s PICU our angel nurses were not only caring for our son, but they were also caring for us. With the words that the ER doctor said still ringing in our ears, our nurse Cara ensured that this was the place to be and that they were going to take the absolute best care of our son. She also stressed that if we were going to be anywhere in the nation, she believed this was the absolute best place and our son was under the absolute best care by Dr. Lefond and the amazing team of neurologists and other staff.
The night of September 27th into the wee morning of September 28th was filled with fear, tears, panic, exhaustion, hope and faith… along with amazing nurses, brilliant doctors, social workers, tests and machines. There were countless tests that were performed on Dominic until 3:00 in the morning. Some of them included an MRA to check his arteries, an EEG to test to check for seizure activity, he was also receiving frequent neural checks and labs. He even had to have a lumbar puncture in his spine to rule out meningitis which also turned out to be clear.
The question still remained: What was causing our seemingly healthy child to have multiple strokes at the age of 9? To further assess the situation, an angiogram was completed several hours later to get a closer look at his vessels into his brain.
The results to the angiogram, the MRI, MRA, and tons of other assessments, allowed our neurology team to deduce that he had what they call a dissection of his left vertebral artery which then caused a larger clot to form in the basilar artery. As the body tried to break down the clot, parts of the clot would break off and cause strokes in three different parts of his brain, making a total of seven individual strokes. Although we have learned from Dr. Lefond that it is very difficult, if not impossible, to date a stroke, based on Dominic’s mood changes, headaches and processing changes, he most likely was suffering from these strokes for the past couple of weeks, until the largest of the strokes sent us to the hospital.
We also learned that Dominic was born with posterior communicating arteries which quite literally saved his life. Only 30% of the population has this which allows more collateral blood flow to the brain. Because he has these it allowed enough blood flow to the damaged area in order to not be catastrophic with irreversible damage. If he was not part of this 30% doctors have feared that he would no longer be with us. The strokes would have taken his life. What is further fortunate about our situation is Dominic's age and neurological plasticity. His brain can recover over time, reroute and create new paths and we are hopeful and expectant for almost a full recovery. And while the journey is long, we are along for the ride and supporting our guy every step of the way.
We were in the hospital for 31 days. Every day was filled with doctors, nurses, therapists, social workers, Child Life staff and other amazing hospital staff members. Our family, church and close friends also never wavered. We had countless visitors, gifts, prayers from people around the world, and notes of encouragement from students at school, members of our church, as well as many supporters of our family who we didn’t know would soon become part of our circle.
That’s when Kaysee with the Pediatric Stroke Warriors came into our lives. The Pediatric Stroke Warriors changed our story. They helped us see that we were not alone. Our eyes were opened to a whole community that we didn’t even know existed. She is a big reason why we will continue sharing our story and advocating for all children and families living through pediatric stroke. Kaysee also sent Dominic a Brave Box filled with gifts that met his interests and needs which also let him know that he was not alone and that there was a whole group dedicated to kids just like him. He felt so much joy and empowerment after opening this special box. We were also gifted through the Warrior fund with gas cards and gift cards for groceries too…which is a big relief for a family whose lives have just been turned upside down.
After leaving the hospital with our son in a wheelchair who was just starting to use a crutch, who was struggling with managing his emotions, who was overwhelmed by the cognitive demand of daily life, we dedicated our time to reacclimating our children with life all together once again at home. Over the past six months since then we have spent hundreds of hours in the car going back and forth to therapies at the Seattle Children’s South Clinic (thank goodness for great Harry Potter audio books!), we have gotten back into a full-time school schedule, we have taken many steps forward and also lost momentum, all the while we have thanked God for every moment of every day.
Dominic’s life is back to normal in so many ways but each day we are adjusting to a “new normal” way of living. Dominic will never be able to try out for the school football team, he will never be able to wrestle, or participate with his friends in a neighborhood boxing match. Try telling a 10-year-old he can never jump on a trampoline, go in a bouncy house or ride a roller coaster ever again for risk of damaging his arteries and having more strokes. Many of his young dreams are shattered because of this. But one thing we keep going back to and one he can keep depending on his is his flexibility and resiliency. Just like the neuroplasticity his brain is going through, Dominic is creating new pathways in life to do the things he loves but in different ways.
Throughout this journey we have learned a lot about love, about who we are and about how we want to live our lives. Some of our story might sound tragic, but we choose to look at it as a blessing. We have learned many things on this journey and continue to as our son continues to grow, develop and heal, such as:
- We learned that God has a plan and to trust full-heartedly in His plan;
- How to truly live in the moment;
- How to rely on others;
- How to encourage others and how to receive encouragement;
- That the therapy pool is seriously so warm;
- That the hospital pizza is seriously delicious;
- That everyone we worked with at Seattle Children’s and Pediatric Stroke Warriors are true saints on Earth;
- That we have the most incredible support team
- That life is just one big roller coaster ride… just hang on tight, lean in the turns, go with the flow, live in the moment and love the ones you’re with;
- We learned that generosity of spirit and the willingness to share our own ‘gifts’ freely with others is such a blessing;
- We learned that Dominic’s strokes have changed us all. That we will never be the same. We are closer, we are braver, we are stronger, we are mightier and we love each other fiercer than we ever have before;
We were given a valuable lesson from a volunteer at the hospital from when her son was at Children’s years ago: That even though we generally look at ourselves as “givers” and that it is hard and awkward to receive charity from others; she said that without receivers in the world, there would never be givers. We will all be in the receiver role at different times in our lives, and it is our job as receivers to allow the givers to do what fills their hearts – to give. We are walking examples of being at the hands of the kindness and generosity of our friends, our family, of Seattle Children’s Hospital and the Pediatric Stroke Warriors…Our hearts are full…and we hope yours are too.
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