Wednesday, July 2, 2014

Still Here

365 whole year.

That's how long it has been since I sat down to write here.

In that time we had new babies born in our extended family, we lost family members we love. We started a new school year. We had a grand total of 4 hospital admissions last summer between June and September.

And on that last admission on September 13th, we darn near lost our boy.

He went into cardiac arrest while we were admitted into ICU for hyperkalemia, so I guess if it had to happen that was the best place for it to happen. The hospital team was amazing and jumped in and did everything they had to do to help him.

He was in Joe's arms smiling and flirting with nurses one minute, and in v-tach the next with people rushing into his room. They were so focused on treating him that no one realized we were still in the room watching their every move, crying hysterically.

After what seemed like forever, the doctor who had been treating him that shift came and saw us and had us step out of the room and Matthew was put into a medically induced coma for three days.

We never got a reason for what happened, every medical test done during the two weeks were in ICU and special care came back negative or normal. The ICU staff began calling Matthew the "International Man of Mystery." The closest thing we were able to come up with was that it was a side effect of his being on the Ketogenic Diet. So we stopped doing the diet which had kept him seizure free for almost a year and a half at that point, and his myoclonic episodes came back almost immediately.

Seeing what happened to my baby, and running through all the "what ifs" really messed with me afterwards. I began having panic attacks more frequently, I didn't want to let Matthew out of my sight for school, and I began even more vigilant and was afraid to sleep at night for fear it would happen again. Helicopter Mamas had nothing on me.

It has taken this long to be able to put this behind us, somewhat. I wasn't able to write out the words and wasn't even sure if I should have continued the blog. I missed the friends I made here, I missed the sense of community of people who "get it" when it comes to our kind of extreme parenting.

I hope we haven't stayed away too long, that you will come back and join us for the ride.
We were lucky, so darn lucky. Our boy is still here.



  1. New friend here! I found you on the shout out post on the Special needs parenting FB page. What a ride you have been on! I'm so glad that your son is still with us. I do understand your anxiety as we've been on a similar ride! I look forward to getting to know you guys better!

  2. Here via the special needs parenting blog group. I'm so sorry you nearly lost Matthew last Sept, but glad he's still with you. I understand this vigilance, though for a different reason. It will get better.