Sloane Strong! Stroke Survivor!
Donation protected
Sloane Lee was rushed to a Banner hospital’s emergency room on July 21st, 2017 at 8:30pm because she was experiencing seizure symptoms. At 11:45pm the Banner hospital prepared to transfer her to Phoenix Children’s Hospital because they had further concerns. Sloane was transported via lights and sirens and was noted to have left side weakness upon arrival. Sloane was immediately taken for an MRI.
Sloane had an acute ischemic right middle cerebral artery stroke on Friday July 21st, 2017. The stroke was not diagnosed until 10 hours after initial symptoms, therefore Sloane was ineligible to receive thrombolytic treatment (tPA) that can reverse the stroke within three hours.
The MRI results were presented at 5am on July 22nd 2017. The results showed that Sloane had suffered a stroke in the right middle cerebral artery territory mostly involving the right putamen. The cerebral artery is one of the major arteries that supplies blood to the cerebrum in the brain. The putamen is a complex structure in the brain that prepares and aids in movement of the limbs. The stroke also involved the right basal ganglia, insula, and frontal lobe. Further tests took place which include a spinal tap, angiogram, CTA, EEG, EKG, echocardiogram, bubble study, insertion of a picc line and two transcranial Doppler ultrasounds.
Sloane was an inpatient for 14 days at Phoenix Children’s hospital. The angiogram revealed that Sloane had many blood clots in her brain and narrowing in the right cerebral artery. At this time the neurologists are not sure what caused the narrowing abnormal artery. There are many theories as to why Sloane experienced a stroke. The first is a dissection (injury) to the artery that healed prior to the doctors’ imagining. In this case, the doctors can only see the abnormal artery and the blood clots. The doctors infer the vasospasming that is occurring could be due to irritation from the blood clots (but if this is the case the spasming should clear within two weeks).
Another theory is that Sloane has Vasculitis. Sloane was put on steroids in the event it was vasculitis (even though a spinal tap did not indicate this). Vasospasming should clear within two weeks due to dissection/injury of the artery. If at that time the imaging still showed spasming then the stroke would not have thought to be because of a dissection. If the spasming continued and vasculitis was not treated with steroids than Sloane was at risk for having a massive stroke. So Sloane was given a round of steroids as precaution.
As of now, Sloane is being treated for the vasospasm due to injury/dissection of the artery AND vasculitis. The third theory of why the stroke occurred is it was caused by a progressive, genetic illness called moyamoya which constricts arteries in the brain and usually affects the circle of willis. Further scans and medical care will hopefully eliminate moyamoya from being the cause of the stroke.
Sloane is currently taking lovenox injections 2x per day to thin her blood which should help to dissolve the brain blood clots and keep more from forming around the narrowing in the artery. Sloane is also taking niMODipine every four hours to keep the artery dilated and assist in the spasming.
Sloane’s official diagnosis is-
- ischemic right middle cerebral artery stroke
- impaired physical mobility
- dysphagia/neurologic
- impaired activities of daily living
- left hemiplegia
- and vasospasm of cerebral artery.
Sloane was all set to begin kindergarten on August 7th, 2017. Sloane has some paralysis in the left side of her body and it was decided that Sloane is not safe to currently attend school. Sloane is working toward regaining mobility and the risks that come with falling while on blood thinners is deeply concerning.
Sloane will be attending outpatient occupational, physical, and speech therapy weekly. She is receiving scans every 10-15 days to (hopefully) find the official source that caused the blood clots/stroke.
In the coming days Sloane will receive cognitive evaluations to see how much regression has taken place from where she was prior to the stroke.
On August 7th 2017 Sloane attended an evaluation with all three major therapies. It was noted that Sloane has already begun exhibiting over compensation habits for her left side. Sloane is conscious of the fact that her left side does not do what her brain tells it to do. Sloane states that her left hand is “weak”.
The therapists informed us (Sloane’s parents) that what Sloane could regain in a year is usually a good indicator of what she can get back permanently and what effects the stroke will have on her long-term.
Current concerns are a lack of diagnosis, frontal lobe damage (cognitive function), and left-side body weakness. Sloane will be homeschooled until the all clear is given for her to safely attend school. Donations that are generously given will help secure additional therapy that health insurance does not cover. (Animal therapy and swimming therapy already have scheduled evaluation appointments).
Sloane is an avid animal lover and it appears that when Sloane is with animals she does not need as much prompting to use her left hand. Swimming therapy will provide low impact full body exercise. The emersion in therapy is so Sloane can regain all the strength back in the left side of her body within the year timeline. Purchasing occupational therapy equipment is also a priority to help strengthen Sloane’s body at home and not just during the seven hours she gets during the week that insurance will pay for. The loft is being transformed into a “school” and “therapy playground” for Sloane.
Sloane is currently on Lovenox indefinitely. The highest risk is that Sloane will suffer internal bleeding and it will not be diagnosed in time. Phoenix Children’s hospital does not specialize in moyamoya so it is our hope that if diagnosis cannot be found relatively soon that we will begin to take her to other hospitals in other states that specialize in moyamoya and strokes in children. It is rare for a child to suffer a stroke, but stroke remains among the top 10 causes of death in children. Stroke is also the leading cause of disability in children.
Finding the cause of a stroke is vital to provide the right treatment and prevent further injury.
Daddy started using Sloane to describe strength. The hashtag #SloaneStrong encompasses the highest level of strength. Sloane’s five-year-old little 44lb body has gone through more than most people experience in their lifetime and she is only 19 days on this path she has been forced to walk on. Sloane Strong encompasses strength, resilience, bravery, courage, kindness, and endurance of the highest level. She is our hero.
Our hope is that we can provide Sloane with the absolute best interventions over this next year including therapy and purchasing equipment, and find a cause so we can be preventative rather than reactive. Please know that anything is appreciated which includes writing a note to Sloane or sharing an animal picture. We are not putting a fundraising “monetary goal” because besides the cost of additional therapy there is really no way to determine, at this time, how much it will cost to take her to out of state for services, or what the cost of surgery on her artery will be if her diagnosis is moyamoya. Whatever is received will be used to enrich Sloane toward progress. Everything received (whether donation or well wishes) will be documented for Sloane so she can see all those who rallied around her and her family in their darkest moments. The kindness that has been exhibited during this tough time has been inconceivable. I hope that this challenging experience will assist in directing Sloane toward her purpose in the future because she has brought out so much good in so many people.
We will continue to update on progress.
XO, FamiLee
Update #1 via Facebook posted July 23rd 2017
Update #2 via Facebook posted July 25th 2017
Update #3 posted via Facebook July 26th 2017
Update #4 posted via Facebook on July 27th 2017
Update #5 part I posted via Facebook on July 29th 2017
Update #5 part II posted via Facebook on July 29th 2017
Update #6 posted via Facebook on July 30th 2017
Update #7 posted via Facebook on August 2nd 2017
Update #8 posted via Facebook on August 4th 2017
Dear Sweet Sloane posted via Facebook on August 5th 2017
Update #9 posted via Facebook on August 6th 2017
Sloane had an acute ischemic right middle cerebral artery stroke on Friday July 21st, 2017. The stroke was not diagnosed until 10 hours after initial symptoms, therefore Sloane was ineligible to receive thrombolytic treatment (tPA) that can reverse the stroke within three hours.
The MRI results were presented at 5am on July 22nd 2017. The results showed that Sloane had suffered a stroke in the right middle cerebral artery territory mostly involving the right putamen. The cerebral artery is one of the major arteries that supplies blood to the cerebrum in the brain. The putamen is a complex structure in the brain that prepares and aids in movement of the limbs. The stroke also involved the right basal ganglia, insula, and frontal lobe. Further tests took place which include a spinal tap, angiogram, CTA, EEG, EKG, echocardiogram, bubble study, insertion of a picc line and two transcranial Doppler ultrasounds.
Sloane was an inpatient for 14 days at Phoenix Children’s hospital. The angiogram revealed that Sloane had many blood clots in her brain and narrowing in the right cerebral artery. At this time the neurologists are not sure what caused the narrowing abnormal artery. There are many theories as to why Sloane experienced a stroke. The first is a dissection (injury) to the artery that healed prior to the doctors’ imagining. In this case, the doctors can only see the abnormal artery and the blood clots. The doctors infer the vasospasming that is occurring could be due to irritation from the blood clots (but if this is the case the spasming should clear within two weeks).
Another theory is that Sloane has Vasculitis. Sloane was put on steroids in the event it was vasculitis (even though a spinal tap did not indicate this). Vasospasming should clear within two weeks due to dissection/injury of the artery. If at that time the imaging still showed spasming then the stroke would not have thought to be because of a dissection. If the spasming continued and vasculitis was not treated with steroids than Sloane was at risk for having a massive stroke. So Sloane was given a round of steroids as precaution.
As of now, Sloane is being treated for the vasospasm due to injury/dissection of the artery AND vasculitis. The third theory of why the stroke occurred is it was caused by a progressive, genetic illness called moyamoya which constricts arteries in the brain and usually affects the circle of willis. Further scans and medical care will hopefully eliminate moyamoya from being the cause of the stroke.
Sloane is currently taking lovenox injections 2x per day to thin her blood which should help to dissolve the brain blood clots and keep more from forming around the narrowing in the artery. Sloane is also taking niMODipine every four hours to keep the artery dilated and assist in the spasming.
Sloane’s official diagnosis is-
- ischemic right middle cerebral artery stroke
- impaired physical mobility
- dysphagia/neurologic
- impaired activities of daily living
- left hemiplegia
- and vasospasm of cerebral artery.
Sloane was all set to begin kindergarten on August 7th, 2017. Sloane has some paralysis in the left side of her body and it was decided that Sloane is not safe to currently attend school. Sloane is working toward regaining mobility and the risks that come with falling while on blood thinners is deeply concerning.
Sloane will be attending outpatient occupational, physical, and speech therapy weekly. She is receiving scans every 10-15 days to (hopefully) find the official source that caused the blood clots/stroke.
In the coming days Sloane will receive cognitive evaluations to see how much regression has taken place from where she was prior to the stroke.
On August 7th 2017 Sloane attended an evaluation with all three major therapies. It was noted that Sloane has already begun exhibiting over compensation habits for her left side. Sloane is conscious of the fact that her left side does not do what her brain tells it to do. Sloane states that her left hand is “weak”.
The therapists informed us (Sloane’s parents) that what Sloane could regain in a year is usually a good indicator of what she can get back permanently and what effects the stroke will have on her long-term.
Current concerns are a lack of diagnosis, frontal lobe damage (cognitive function), and left-side body weakness. Sloane will be homeschooled until the all clear is given for her to safely attend school. Donations that are generously given will help secure additional therapy that health insurance does not cover. (Animal therapy and swimming therapy already have scheduled evaluation appointments).
Sloane is an avid animal lover and it appears that when Sloane is with animals she does not need as much prompting to use her left hand. Swimming therapy will provide low impact full body exercise. The emersion in therapy is so Sloane can regain all the strength back in the left side of her body within the year timeline. Purchasing occupational therapy equipment is also a priority to help strengthen Sloane’s body at home and not just during the seven hours she gets during the week that insurance will pay for. The loft is being transformed into a “school” and “therapy playground” for Sloane.
Sloane is currently on Lovenox indefinitely. The highest risk is that Sloane will suffer internal bleeding and it will not be diagnosed in time. Phoenix Children’s hospital does not specialize in moyamoya so it is our hope that if diagnosis cannot be found relatively soon that we will begin to take her to other hospitals in other states that specialize in moyamoya and strokes in children. It is rare for a child to suffer a stroke, but stroke remains among the top 10 causes of death in children. Stroke is also the leading cause of disability in children.
Finding the cause of a stroke is vital to provide the right treatment and prevent further injury.
Daddy started using Sloane to describe strength. The hashtag #SloaneStrong encompasses the highest level of strength. Sloane’s five-year-old little 44lb body has gone through more than most people experience in their lifetime and she is only 19 days on this path she has been forced to walk on. Sloane Strong encompasses strength, resilience, bravery, courage, kindness, and endurance of the highest level. She is our hero.
Our hope is that we can provide Sloane with the absolute best interventions over this next year including therapy and purchasing equipment, and find a cause so we can be preventative rather than reactive. Please know that anything is appreciated which includes writing a note to Sloane or sharing an animal picture. We are not putting a fundraising “monetary goal” because besides the cost of additional therapy there is really no way to determine, at this time, how much it will cost to take her to out of state for services, or what the cost of surgery on her artery will be if her diagnosis is moyamoya. Whatever is received will be used to enrich Sloane toward progress. Everything received (whether donation or well wishes) will be documented for Sloane so she can see all those who rallied around her and her family in their darkest moments. The kindness that has been exhibited during this tough time has been inconceivable. I hope that this challenging experience will assist in directing Sloane toward her purpose in the future because she has brought out so much good in so many people.
We will continue to update on progress.
XO, FamiLee
Update #1 via Facebook posted July 23rd 2017
Update #2 via Facebook posted July 25th 2017
Update #3 posted via Facebook July 26th 2017
Update #4 posted via Facebook on July 27th 2017
Update #5 part I posted via Facebook on July 29th 2017
Update #5 part II posted via Facebook on July 29th 2017
Update #6 posted via Facebook on July 30th 2017
Update #7 posted via Facebook on August 2nd 2017
Update #8 posted via Facebook on August 4th 2017
Dear Sweet Sloane posted via Facebook on August 5th 2017
Update #9 posted via Facebook on August 6th 2017
Organizer
Stephanie Lee
Organizer
Phoenix, AZ
