The Beast

The Beast decided to come out of hiding yesterday. At PCMC of all places. You would think that in a place surrounded by doctors, we would have a little help. The last two times we have been there in the last two weeks, Cole has needed rescue meds. Weird.

We went for Cole's 2 week g tube follow up. He started seizing in the playroom, on his hunt for a cozy car. The jerking continued, so Brian brought him back to me in the waiting room, to give him meds. It was our turn to go back to get height and weight. We explained what was happening and they put us in a room. Our surgeon came in, saw what was going on and said, "I'll give you a minute and come back" and walked right back out. I guess we looked like we had things under control? He asked if he could do anything to help as he was backing out of the room and I mentioned that Cole's sats were dropping and we could use the oxygen in the wall. Guess he didn't hear me? :) I doubt he has patients seize in his office very often. I had to send Brian to get someone else to find the tubing. The surgeon didn't come back for 15 minutes.

It turned out to be a big one. 15 minute Generalized Tonic Clonic with hard convulsions. He needed two different rescue medications and we had the staff searching everywhere for an oxygen mask. The O2 is right in the wall, but rarely do people use it in clinic...just us ;) He had post ictal blindness again. That has not happened for a few months, and it is only the fourth time ever. For something so rare, it is happening a lot. Chalk it up to Cole being complicated I guess. It did help when we were giving him O2. He couldn't see the mask we were holding by his head, so he did not fight it like he usually does. Gotta find something good about it, right?

Poor kid. His post ictal phase was rough. He couldn't see, couldn't walk and was very limp for a long time. Plus, the lovely angry elf came out with the Versed. Needless to say, it was an interesting visit. However, Cole's g tube looks great! We do love the surgeon even though he was not the greatest first responder to our predicament. We can stop taping it and can treat it like normal skin. He can get back into the the bathtub and even swim (if that was a possibility). We came home and just gave him a full tube feed since he was still in his post ictal phase. I am loving this thing more and more each day. There is no way that I could have convinced him to eat lunch while he was riled up with Versed and still kind of limp from an intense seizure. He doesn't have his post ictal naps any more. It would probably be easier on him, and us, but something has changed and he does not fall asleep any more, hasn't for a while.

I am hoping that we can put the beast in hiding again. 24 days without a GTC! Our previous record was 22 days. This is something to celebrate, but it always hurts when he has gone for so long without a Generalized Tonic Clonic.

You can never get comfortable. Things will change. They always do.