Finding our rhythm

Sara's been home a couple of months now and we seem to finally be finding our rhythm. It has helped so much to have the three nurses. We are still way short of her entitled nursing hours, but it is very manageable.

We've been able to start adding back in the range of motion exercises, speech therapy exercises, and work with her more on communication. Before we had the three nurses all the nursing items were handled by either a single nurse or me - and that left no time or energy for anything else. It worked out fine, though, as Sara just needed some nice rest time and to settle into her home environment.

So, now, the load is shared among the three nurses, Mike, Michael (as needed), Don (as needed) and myself. And, due to her breathing getting so much better and maintaining her oxygen saturations better she has longer periods of not needing suctioning. I don't know if you remember, but the number of suctionings per hour was a deciding factor for whether she could go to Vallejo, when she could move to Rossmoor, if she could come out of ICU, and when they felt she could come home. So, I do watch that frequency as an indicator of her progress or current status.

I do think I need to get her into Kaiser for a little check up - get a good listen to her lungs and make sure we're all clear. Her secretions are good and she coughs out any junk she accumulates, so I'm sure she's ok. I just like to make sure, as respiratory issues are her greatest risk.

She remains in good spirits, although she hasn't had any visitors. I told her that it is just going to have to come down to her reaching back out to them, communicating with her computer, and helping people start to figure out how to relate to her again. That and we will have to start really getting her out of the house and going places. Let people see her out living. Its still quite an event to try and get out of the house. We don't yet have any appropriate wheelchair-accessible vehicle and she's still in a manual chair. Last time we took her to the hospital we howled laughing at the jury-rigging job we had to do to get all the required oxygen and equipment to hang off the chair. It took us two hours to get her packaged and transported and back into the chair, was at the hospital only 45 minutes, then another hour and a half getting her back the other way and to home and bed. Luckily we were all laughing at how completely inept we looked man handling a laughing quadriplegic in and out of a volvo.

I love how she laughs at everything. We struggle, she laughs. We mess up, she laughs. We curl up our noses at something in her care, she laughs. She has told me that since she was forced to slow down she can better see how comical everyone else's toiling really is. She has stated that its easier when its slower.. She may have something there...

I finally got through the mountain of paperwork, mail, and related junk that has accumulated around the house for months. I get mail from the box and it gets tossed onto yet another pile or box. Well, I finally got it all opened and organized. Now I can start to get the filing, and bill paying organized and done. I'm real bad at paying bills. I just can't seem to either remember to or discipline myself to stop everything and sit down, balance everything, and write checks. Before Sara's accident I was doing it. Had come a long way on dealing with finances and getting disciplined - I was doing it with her as she did her stuff, too. So, anyway, I've asked another friend of mine who is real good about it to help kick me back into rhythm with it all. I can't keep waiting until something is either shut off or my phone is ringing incessently for me to sit down and handle the household items. Ironically, i'm like clockwork for the items related to Sara and her care. Bills for her stuff and taken care of as soon as I get them. I guess I'm kind of thinking i'll get to the rest of the stuff soon, then time gets away from me.

So, having more help around here with her is making it possible for me to get back to the business of taking care of the whole family, not just her. And, getting back to the business of doing work stuff at night and weekends, which keeps them happy.

So, I'm going to get back to it. Just finished the piles, started dinner and now will start getting the piles to their respective correct area. I have two major ones - Current Bills and Sara Action Items. I have several applications and supporting documentation to submit for different services - new and ongoing. And getting the current bills all in one pile (the first time since we've moved into this house) will allow me to but them into my budget spreadsheet and start handling things a bit neater and quicker. It does feel good to look across the room, from my office to the kitchen, and see a lot less things sitting there, waiting for me to get time or energy to handle. Little by little, in our own areas in our own ways, we get there day by day.

Right now Sara is sitting up in the wheelchair in the living room watching Sunday football. Yes, Sara likes to watch football. She and I used to lay around on the couch on Sunday afternoons and do it, too. The team really doesn't matter. It's just nice to watch good looking, in shape men, do what they love and ooze testasterone. Then we'd watch Extreme Makeover Home Edition. She's on me to put in an application for her and all the paperwork. Week after week we watch other people and families with huge challenges get help to change their lives and make things easier.

One reason for my hesitation is that you can't be actively involved in a lawsuit when you apply. Well, that kind of holds us off until our legal actions are settled. There are people responsible for parts of what happened to Sara, and certainly for how bad it got. The neurosurgeon at Santa Rosa Memorial who missed the vertebral dissections in her neck and let her have a stroke, then delayed sending her to another hospital because he didn't think she had insurance. He wasn't qualified in Trauma, but yet was the person standing there making decisions based on his limited understanding of Trauma or experience as a Neurosurgeon (only been one for 6 years.) And he barely examined her and just went home. Yeah...we need to get this settled before applying for an Extreme Makeover. Maybe we'd be able to get what we need for her ourselves and let ABC/Sears help others who can't find another way. She wants to look in his face - let him see what he missed and let happen to her - through his complacence/negligence/limitation - and be held accountable the only way he can. Too bad you can't have a doctor change places with you so they can REALLY know...

Ok. enough on that. have to check on dinner and keep going with the piles of paperwork.

More soon...