Tuesday, May 07, 2013

EEG (Not Pronounced eeeeeeeg!)

I just got home from taking Connor to get recording electrodes glues to his scalp for a 24-hour EEG (Electroencephalagraphy) test.  It's been cloudy, drizzling, raining, and pouring intermittenly all day.  I'm down, partially from sleep and partially from doing something so outward and obvious in terms of testing Connor.  These days are harder as we have the immediate visual reminder of the testing materials on him that say "Your boy is not well."

Last night, for the second time in his life, we forgot to give him his medications before bed.  We've just changed his dosing times, and it takes a  lot to remember it sometimes in the craziness of dinner with the boys, and then playing and then, if we are lucky, an unrumpled bedtime routine.  Usually, we are pretty rumpled by the time the Wright brothers are in bed.

So we forgot.  At about 10, he started having a type of seizure we haven't seen in a very long time.  We talked about the fact that we hadn't seen that in a long time, but we did not remember at that time that we had neglected to give him his normal dose of anti-seizure medications. 

At midnight, he was making some more noise, fine really, but noisy. And Lee said, "Did you give him his meds?" and all at once we realized we were 5 hours late dosing him.  Pushing him without realizing it into a bad night.  I went and got his meds and get them into him, and then he drifted back out and had a pretty peaceful rest-of-the-night.  It took me an hour, though, to recover from feeling that I'd really let him down.

The only other time something like this has happened, we didn't realize until we were preparing his breakfast the next day and adding his medications in.  So this time, we didn't forget-forget...he did at some point get the dose.

Anyway, now his head is all swaddled in gauze and we are to track any activity we want the doctors to review specifically once this 24 hour period is over.  Tucker is most interested in seeing what it all looks like.  I will let him see when I have the pleasure of removing everything from his head tomorrow.  Until then, the top half of him is essentially in lockdown - no one touches him unless his head catches fire.  Which it won't.  And in the meantime, I'm hanging a sign on his door to his room that says, "Have I had my nighttime meds?"

Just so we can be sure. 

To recap on other things...

So far I am not doing so well with the exercising. I'm hoping to really set a schedule tomorrow and stick to it. It's hard, as it turns out, especially when it's raining nonstop!

Also, it's hard not to eat Goldfish, or chocolate dipped granola bars for breakfast. They are just so HANDY when I am running out the door!

However, today is a big day because one of my IS Mama friends is having a baby today. I know that she and her husband are handling a lot of emotions today. I know that they are thrilled and excited to meet their new baby. I know they are scared and nervous that something could happen to her as happened to their Wonder Boy who is so much like Connor. So for them, I write this:

In early 2006, we found out we were expecting another child and set about making sure we tested everything we could test, and did everything we could do to make sure this baby did not have the fight that Connor does.  I spent an inordinate amount of time being utterly certain that everything was going to be absolutely fine.  Then, three days before he was scheduled to be delivered, little Drew started knocking at the door to come out, so we headed over to the hospital as soon as Aunt Erin could get to our house.  I lured her with, "We need you to come take care of Connor so we can go to the hospital and I know it's 6:00 am but I have COFFEE!"  (It totally worked.)  It was a quick move through registration and prep to the operating room.  When you are having medically required C-sections, it can go quickly if there's no line.  There was no line that day.  And I remained in my obnoxiously-certain-of-everything-being-fine state until we went into the OR, and they started hooking me up to machines.  Lee, all scrubbed in, was sitting on a stool next to me, and chatting with my doctor, asking if he could watch.  She agreed but informed him that if he passed out, he would be dragged aside and left on the floor.  He was fine with that.  He turned back to me, and I must have looked terrified.  He said, "What's wrong?" and I said, choking on tears gone unshed for 9 months, "I'm really scared." 

"I know.  Me too."

My wonderful OB popped her capped head over the sterile drape and said, "Everything okay up here?"  I wept and said yes, just a little nervous, etc...downplaying where I really was.  "Colleen," she said, a little sternly, "I can't deliver this baby until you stop crying.  Because I can't make the incision with your stomach jumping all over from erratic breathing from crying." 

My doctor is awesome.  It totally settled me out, got me back in the  moment I needed to be in, which was to welcome my second son to the outside.  I pulled myself together.  Drew was delivered.  After a little bit, Lee and Drew headed off to the nursery and the rest of my delivery was completed. 

And he was fine.  Today, he's smart, charismatic, funny, and most of all, kindhearted and friendly. Having him helped me learn to balance my fears over the future I cannot totally control with the unabated joy of having a family.  Having a family was a lifelong goal of mine.  What I didn't realize when I was young that while you can have that goal, you cannot control anything once they get here.

I can't wait for my friends' little baby to bring them some peace today too. 

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