Super Beans - Cohen's Story

My name is Tammy, and I'm a mom of 3 boys. Cohen is our youngest and previously healthy son.  On August 20, 2012 he was admitted to the Stollery emergency with a high fever, vomiting, severe lethargy and 2 different types of rashes.  We thought he had the symptoms of meningitis, but it was a severe blood infection.

By the late evening of August 22, 2012, Cohen was admitted to the PICU.  We were told that Cohen had suffered 8-10 strokes and the infection was further attacking his heart.  August 23, 2012 was the day our little Cohen had open heart, by-pass surgery.  And it was a success.  The surgical team was able to take off the growth, but they needed to replace one of Cohen's heart valves as it was severely damaged by the bacteria.  Cohen will have to have at least 2 other heart surgeries as he continues to grow to replace the valve.  As Cohen started his recovery in the Cardiac section of the PICU, he seemed to be improving.  He was still on many IV antibiotics and drugs, but he had started speaking again and had about 8-10 words before he was moved to the ward and out of PICU.  

I'll never forget the night of September 7, 2012.  The Rapid Response Team took Cohen back to PICU.  Cohen had had an aneurysm and his head was swelling from cerebral spinal fluid, still another aftermath of the blood infection.  Cohen had a tube inserted into his brain to drain this fluid and relieve the pressure.  He had also suffered seizures.  Soon after, doctors sent Cohen in for an angiogram and glue was inserted into his head to hold the aneurysm in place to prevent further brain damage.  The aneurysm burst under the pressure of the glue, but the glue held the clot in place.

Just as this seemed to have been brought under control, Cohen then developed vasculitis and was put on high doses of steroids.  This seemed to have cleared up so Cohen was taken again for another angiogram to get a better look at his vessels and arteries.  We never thought he'd have an allergic reaction to the angiogram dye, especially since he's already been exposed to this only a week before.  Cohen had an anaphylactoid reaction.  Another completely unexpected and horrific event.  His run of “very bad luck” never seemed to end and he couldn’t catch a break.

Throughout this second stay in PICU, we still weren't sure how Cohen's vision was affected and what exactly he could see.  We knew his right side was severely affected by his first set of strokes and now the left side of his body was severely impaired from the aneurysm.  If that wasn't enough, we were extremely worried as Cohen hasn't said a word or acknowledged any sort of understanding for weeks after the aneurysm.  Because Cohen still required the tube in his head to help drain the fluid, our options were fairly limited and it looked like Cohen would need a shunt.  So, after many conversations with our neurosurgeons, we tried a 3rd ventriculostomy surgery.  Although initially his pressures looked like they were dropping, Cohen ultimately still had to have another surgery for the VP shunt placement.

On November 4, 2012, Cohen was discharged from the Stollery after 77 days, 55 of which was in PICU.  Cohen is truly our miracle child. Our ultimate goal for him is to be able to walk again and I know some day that will happen, just not for a while.  But for now, he is a happy child learning to move again on his own terms and in his own ways.  Cohen is very motivated, stubborn and determined.  All amazing qualities to have for someone who recently became very ill, recovered and is now on a new journey of rehabilitation.

Way to go Cohen!  You truly are a SUPER BOY BEAN!!