Have you ever been awoken in the middle of the night by an alarm? Not your alarm clock, but, like, the smoke detector, or fire alarm, or burglar alarm? The kind of alarm that makes you go from a dead sleep to standing and taking action in less than two seconds? If you have, you know how my night was.
Yesterday was a boring day. Rachel and I sat in the room and watched Ginny sleep all day. She didn't really make any progress, but we had expected her to get worse, so no progress was actually pretty good. The plan for tonight was for Rachel to go sleep at her parent's house and I would stay here with Ginny. Around 8 or 9, when Rachel was starting to get ready to leave, Ginny started waking and trying to sit up. We'd been trying to keep her sedation at a Goldilocks kind of status (not to little, not too much, but just right - that's not as easy as it sounds, because every person reacts differently to different levels of medications). She's on three different sedatives at different doses, and we had tweaked the cocktail so that by 9:30 we thought we had it. Rachel went home at 10, and I laid on the a somewhat comfortable fold-out chair, and was asleep by 10:30.
Shortly after midnight is when it hit the fan. I was awoken by the crash alarm and the voice of David, Ginny's respiratory therapist notifying all the staff in the unit that Ginny had pulled her breathing tube on her own. (Keep in mind, I'm sleeping about three feet from her bed). Within a second I was on my feet trying to help David keep her still and bag her with oxygen so that her sats didn't drop too low. It may have been three more seconds before her nurse was in the room, followed quickly by the rest of the PICU team. I stood back and watched as they worked within a few minutes they were able to get her re-intubated. It appears that by using her tongue and thrashing her head, she worked her tube out to the point that it was no longer doing what it is supposed to. I called Rachel as the team was coming in the room, and they were done by the time she got here. It was all pretty scary. But she wasn't done there....
After about an hour of hanging out, and after the x-ray confirmed her tube was in place, Rachel went to the Ronald McDonald Room to sleep in a slightly more comfortable chair, and I stayed here in the room with "Genevieve the Destroyer". To make matters worse, Rachel is not feeling well, either. She probably also has RSV, though it won't be nearly as devastating because of Rachel's advanced age, and she isn't immuno-deficient in any way. (Yes, that's an old joke. That's what you get for putting "40" on every one of my birthday cakes since I turned 36...)
I got a little bit more sleep before Ginny's next attention grab. About 3 am, I was awoken by David again, with Pam and another respiratory therapist working on Ginny. Her sats were down to the low 80's but she had bit down on her tube and was trying again to work it out. This time it didn't take long to get her calmed down again and "sleeping" pretty comfortably. I got a few more hours of sleep, and now I'm waiting for rounds to hear about today's treatment course.
I've heard from quite a few professionals up here in the PICU that they haven't seen a fighter quite like Ginny before. She's on a lot of sedative and still manages to open her eyes and try to fight against anything she doesn't like. Several folks have commented on her physical strength. She is one tough little girl. My conversation with David went something like this: "Where's she get that from? Which one of you is the stubborn ornery one?" he asked me. "That's the problem. It's both of us..." I said. "Good luck with that when she's a teenager." Yeah, I know....
Right now she's pretty sedated, but occasionally opens her eyes and tries to sit up and raise her arms. She's restrained so she can't pull her tubes out anymore (at least not with her hands). She's on the ventilator with 65% oxygen, and getting inhaled nitric oxide at 20 ppm (I probably have a blog entry from a couple years ago about the "baby crack" effects of nitric...), she's on 3 sedative drips and 3 antibiotic drips, in addition to her IV fluids. She's got a tube in each nostril - a nasal gastric tube to put things in her stomach, like her oral sildenafil meds, and a dopoff tube that goes past her stomach to the top of her guts for some nourishment and to keep things moving. It's not a pretty scene, so I won't be putting any pictures up for a while. I will add this one of her in the ER on Thursday, just to keep it a little cute.
Rachel is going to the clinic today to make sure she doesn't have the flu before she comes back in the room, so it's Daddy & Ginny for most of today. I'll keep everyone posted on her progress as the day goes on. Thanks to everyone for their love and support.