Another BAD word

We’ve heard DEAF. We’ve heard LEUKEMIA. These words you never want to hear, especially in reference to your child. Yesterday, we heard STROKE. Yesterday, around 10:00 a.m., Ethan had a stroke.

This doesn’t happy to 5 year old children….right? This isn’t suppose to happen…

So, I’m getting over that part…

WHAT HAPPENED?: Ethan went to Anna Jacques ER via ambulance yesterday morning after I found him on the bathroom floor crying, wet pants from an accident, without use of his left leg, left arm, and left side of his face was severely drooping. 911…ambulance…Within 1 hour of arriving to the ER in Newburyport, we were in a ambulance to Children’s ER. He regained movement of his left side and his face within an hour or so of arriving in Boston. He was back to himself. Within another hour he started losing movement in his left side again. An MRI became the highest priority at that time.

STROKES are not something that anyone is expecting in Ethan. This is not part of the plan. There is no apparent reason for this.

From the ER, Ethan’s ear surgeon (who had done both of Ethan’s CI surgeries, but has never done this procedure) took him immediately to the OR. Ethan’s internal portion of his cochlear implants contain a magnet (these magnets allow the external magnet to adhere to the outside of his head). Magnets cannot be in Ethan’s head for an MRI. The surgical procedure is to remove the magnet only, which lays on the outside of Ethan’s skull. It does not require the entire cochlear implant to be removed.

Ethan’s was under general anesthesia to remove the magnets, and while in the OR, his primary doctor did a lumbar puncture, so they were able to analyze his spinal fluid.

Ethan recovered in the PACU (recovery unit), and then we headed to MRI around 6:30 p.m.. After 90 minutes of watching various medical teams come together to form a plan (a.k.a. fumbling around), Ethan was being sedated again, and was in the MRI room @ 8 PM. During our wait, Dr. Lehman, head of Stem Cell Transplant, came down to MRI to tell me Ethan’s spinal fluid was “clear”. This means only 3 white blood cells (which is normal), and at a first glance, no appearance of leukemic cells. PHEW….

So, Ethan was under sedation, but not general anesthesia, and at 10 p.m., we headed to the PACU (recovery unit) again. New record for us, PACU twice in one day. While in the PACU, the Stem Cell Transplant Fellow on-call, Dr. Michelle Lee (who we know and has done other stuff for Ethan and Eliot before), comes in to let me know the MRI shows that Ethan had a stroke, on the right side of his brain, in the Basil Ganglia (sp?). The clot is so small, is hardly shows as a clot, and the vein is a very small vein. It’s located near the portion of the brain that controls gross motor function, which explains Ethan’s loss of movement on his left side.

The doctors from Neurology are leading the show right now. Hourly assessments throughout last night, and today they’ll be every two hours. He’s receiving aspirin once a day (a blood thinner). Ethan has almost full movement back in his leg and arm. He’s playing video games already .

As of now, now reason, no apparent cause…lots of questions. Because we don’t know why, they can’t tell us if it’ll happen again.

Shock…Disbelief?…Confusion…we don’t know what to make of all of this. Ethan was seen exactly 24 hours before this happened at Clinic, by his primary doctor. He was doing amazingly well! Great blood counts, gained 0.8 kg (over 1 lb), wasn’t coming back in for 3 more weeks, yesterday was the first day we were weaning him off his immunosuppressant, he was DAY 101 post transplant!…a milestone!

Emma and Eliot were troopers yesterday morning, throughout the chaos. As I held it together as much as I could, from the 911 call, to the 6 strange men in our living room, ambulance, police car, fire truck?, etc., Emma held it together even better. She helped me as best as she could. She answered questions posed to her. She wanted to cry, she needed a hug, but she held it together. Poor Eliot, I realize I never talked to him the entire time this was happening, until I told him the policeman was taking him to our friends’ house. On the outside he seemed unphased, but I know he was trying to be strong, and not cry…just like Emma. Grandma Mary is at our house now with Eliot and Emma. She flew in last night…SuperGrandma to the rescue. Thank you Mom…

So, I could go on forever….thank you for your prayers…we need them…Ethan needs them…more to come as we learn.