Techno Camping -- Life Out Of The Hospital

Yes, techno. And camping. We're mixin' it up a bit around here. I came home at dinner time tonight, Devon went to the hospital after we went out for some dessert & some quiet talking time, and then Avery & I decided to put up the tent and camp out in the back yard. We're the best camping team -- girls only! She was bummed, though, when she realized that it wasn't going to involve s'mores tonight, but she got over it. We had a great visit before she zonked out. Then, when she was asleep I was able to pull out the laptop & go -- our awesome wireless network even works out in the back yard! It's hard to believe they still haven't managed to set up a wireless network at ol' Emanuel yet, although they are working on it I hear.

It's really nice to get a break from the hospital. I've been coming home in the evenings all week, and it's really helped me to clear my head a bit. There are so many things going on, on so many levels, that hospital times are really overwhelming. Sleep falls to the wayside as doctors and nurses come and go, monitors and pumps bleep and flash. First there is the initial chaos of it all -- getting caught up in the moment of "saving" Jordan. But as hours turn to days, the big picture items emerge, and need to be dealt with. Should we have called the ambulance? Should we fight colds with $4800/night hospital rooms? Should we let nature take its course, knowing that surviving a cold is not going to provide any improvement to her overall well-being? Should we sign her up for hospice & "give up?" Or should we get her a trach so we can suction her more easily & hopefully avoid the hospital when she gets a cold (and probably get more sleep in between colds)? Where do we draw the line? Doctors, nurses, and social workers at the hospital are asking us these questions, and we don't know what to say; it depends on the minute, the hour, the amount of sleep deprivation, whether Jordan is coughing miserably, or sleeping like an angel. But every time we're at the hospital, these are the questions that are thrust to the forefront. I guess because we can't easily answer these questions we can't give up trying for now. But some day we will get to the point when we know that enough is enough.

One thing I realized today is that we are not going to be able to make any decisions we can live with until we can get some help with her at home. First of all, we're too sleep deprived to be thinking clearly. Secondly, I don't feel like she's getting a fair shake at things. If we were poor enough to be on Medicaid, we'd have had nursing help in our home for up to 16 hours a day, probably since she was just a few months old. With help like that I believe our heads would be clearer, our bodies more able, our spirits higher. Would we even be contemplating these tough decisions, or would we be fighting on like we always do? We're just so worn out from all of this.

In the short term we are focused on getting her out of the hospital and back home. She is really on the mend, and short of a few coughing spells & a few isolated times on (low) oxygen, she's almost back to normal. Maybe we'll all be home tomorrow. The hospital crew is jumping on board to help us out at home -- they are working very hard with our insurance company and with the state of Washington to get Jordan out of the hospital and back home with some nursing help. It's very complicated, but it's possible. I'm not sure if it's probable, but it is possible, and considering that it's only August and that fall & winter are coming, I think everyone is motivated to keep her at home a much as we humanly can through the cold & flu season.