Thursday, December 15, 2011


Today was going fine, until about 3:30 a.m. Yes, a.m. We didn't even make it to dawn before a Bad Thing happened.

Brett had just kissed me goodbye for the day, and I had rolled over to take advantage of having the whole bed to myself, while he went out to the shop to enjoy his coffee, as he does each day before work. Minutes later, I heard a strange sound, and then heard it louder again, and realized it was coming from the monitor in Rachel's room. *insert really filthy word here*. I dove out of bed, grabbing for my glasses, and lurched into her room, to find her flat on her back, completely stiff, not breathing, eyes wide and dilated. I swiped her VNS, and pulled her onto her side, so she wouldn't aspirate, propped her up with a pillow, and ran out to get Brett before he left for work.

Rach came out of the seizure pretty quickly, but remained unconscious for some time, finally falling into a normal sleep after about 30 minutes, and then slept peacefully until about 7 a.m. Since Brett was already up and dressed, he let me go back to bed for a couple of hours (as Rach had experienced some insomnia and I didn't get to bed until after midnight), while he stood watch over the monitor, and then decided to go on into work when we realized that she was probably not going to be in imminent danger of more seizure activity. We have learned to be afraid of the possibility of SUDEP (Sudden Unexpected Death in EPilepsy), as these types of seizures are often the precursor.

As it happened, we already had a scheduled neuro visit set for this afternoon in Portland, so at least that was good timing on Rachel's part. We have a fabulous neuro nurse practitioner, named Bridget, and we got to talk with her for over half an hour, going over every single thing, and working on a plan of action for the short-term. We don't have a lot of solid answers yet, but we have some things to tweak and check out further, including the possibility of a battery or unit replacement of Rachel's VNS. 

Finally, we made it home from Portland just before 3 p.m., just sort of tired and bummed. As fate would have it, I opened Rachel's email, and found a donation from Deb, my friend-in-law, for $1500! Adding in bucket donations picked up this week, and a cash donation from a friend, we have a new thermometer total of over $7770.00!

This has been such an emotional day, with huge downs, and then a huge up. Sometimes the universe is able to balance the scales, but I wish we didn't test the theory quite so much. Rachel's back and neck are stiff and sore, and she's more tired than usual, but she's still okay, and still the really awesome, positive young woman she's always been. It's going to be another sleepless night for me, keeping closer watch, but that's a small price to pay. We'll keep this up as long as it takes to keep her safe, but we are really looking forward to having canine backup, and we're hoping it comes soon.

No comments:

Post a Comment