Today we celebrate the day that Ellie survived a massive
stroke. It may sound strange to some
that we would celebrate a day that will forever be etched in our minds as one
of the worst days of our lives. That
morning I had dropped Payton and Ellie both off at preschool. Ellie had just started preschool and she was
still upset during drop off times so it wasn’t surprising to me that she was
crying when I left her. I went from
there to the grocery store and while there, I received a call to come get Ellie
because they were unable to calm her down.
I went straight to her school and brought her home where she continued
to be inconsolable. Ellie has had many
days like this in her life and since we know that migraines are a common symptom
with Moyamoya Disease, that’s what I thought she was experiencing.
A couple hours later I was able to get Ellie to fall asleep
in her crib for a nap. But only about 20
minutes into her nap I could hear her screaming again. I went in to get her and the second that I
saw her, I knew she had suffered another stroke. She was trying to sit up but she couldn’t and
was struggling on her stomach, flailing about like a fish out of water. I called 911 and when they got there I had to
hand Ellie off to the paramedic so that I could grab Payton out of her bed and
into the ambulance with us.
At the hospital Ellie’s condition continued to get
worse. She was still extremely agitated but
her body was limp like a rag doll and she lacked the ability to support her head,
her eyes unfocused, she was nonverbal, and around 5 p.m. she started having
seizure after seizure. Because UTMB is
unable to get an IV in Ellie, we could do nothing but wait for hours for the
TCH kangaroo crew ambulance to come get us.
It was horrible watching her have all those seizure with no one doing
anything to help her. Around 8 p.m. the
TCH ambulance crew, who had been on the job for the past 14 hours and had
traveled across half the state that day transporting patients, arrived and was
able to get an IV going and transport her to Houston.
Once at TCH they rushed Ellie into an MRI. From the MRI we were given the news that
Ellie had suffered a massive stroke, affecting 2/3rds of the left side of her
brain and blocking 2 major arteries. We
were warned that unfortunately with a stroke this size, Ellie was likely to get
worse because the swelling in her brain would continue to increase.
And things did get worse.
Ellie’s neurosurgeon, who has performed over 120 Moyamoya surgeries,
said he had never seen a case as severe as Ellie’s. We asked if he would call Dr Scott of Boston
Children’s Hospital to see if he had ever seen a case like this and what he
would recommend. Dr Scott said that he
had only seen one case that sounded like Ellie’s and that child didn’t make
it.
That day was terrifying.
We knew we could lose Ellie at any moment. The following days and weeks were equally as
scary as Ellie continued to have smaller strokes, seizures, and eventually
underwent an extremely risky brain surgery that ultimately saved her life.
But we celebrate this day because God brought us through
it. It wasn’t the last day we would
spend with Ellie. We don’t know why we
eventually got to take Ellie home from the hospital when plenty of families
never do, but we are forever grateful for every single day we are given with
our children.
And while there are parts of Ellie’s recovery that have been
heartbreaking, there has also been so much joy in watching her reach new
milestones. Most mothers only get to
experience the joy of their child saying “Mama” for the first time---- I got to
experience that joy twice when Ellie learned once again to say my name. And we got to watch her learn to walk twice
as well and it was even more exciting the second time around.
If you’ve ever been around Ellie then you’ve been around a
true miracle. She is proof that God
still performs miracles today. Why
wouldn’t that be worth celebrating?
