Lots to update...

It has certainly been nearly a week of constant change. It has come so quick that I have not had opportunity to update, and when I did have time I was exhausted from all of it. So, let me update the world on Sara's Status.

As I had blogged before, we had a discharge planning meeting a few weeks ago. Kaiser discharge planners were going to look into Kentfield and other subacute facilities, and they encouraged me to continue to look for a subacute closer to home. Well, we found both on the same day. Kaiser found Rossmore Care Center in Walnut Creek and I found Evergreen Rehab in Petaluma.

I received three calls in rapid succession on Wednesday telling me to go look at Rossmore, and I let them know to check out Evergreen. I called my son and asked him if he would come out to Walnut Creek and look at the place with me. I value his opinion and he'd see things I might not focus on. So, we jumped in the car (BTW - it is all back and working. Got it back on Tuesday after all those repairs...yikes...$$) and drove to Walnut Creek. Almost 3 hours later we arrived there...three hours...75 miles closer and a whole lot more traffic. Ok. Well, its about the care and not the drive (as my 16 year old son pointed out to me...)

We took a look outside the building. Clean, cared for. Good start. We went in and talked to the Assistant Director of Nursing and asked for a tour. The admissions guy had gone for the day and they were very pleasant to accomodate us. She walked us through the skilled nursing unit. That is populated by just seniors. It is the nursing home portion of the facility. It was also clean, no seniors were calling out, some were out of their rooms talking to others, and there was no overwhelming odor of urine. It sounds bad to some people, but these are basics when looking at a unit.

She walked us back to the SubAcute unit and the nursing station. She checked in with the nurse at the desk as to what we were going to be doing there. I liked that. She also checked in with one of the two unit RNs on duty to let her know too. She took us slowly down the row of rooms answer our questions - 6:1 nursing ratio, 2 RNs and 4 CNAs, 26yo female is youngest, they are all trained on ventilator management, they would be comfortable communicating however Sara needed, they would watch her a little closer since she can't call a nurse, yes, that is a kind of bathtub we could use with her, they don't have to stay in their rooms all the time, they have good Physical Therapists and the residents look forward to PT, we can decorate her room, we can bring in our own Neurologist and treatments but have to be coordinated with the Medical Director, in case of a major issue closest hospitals are Kaiser Walnut Creek and John Muir Medical Center, yes there are visiting hours, no mom is not restricted to those...

Michael and I came away with a pretty good feel for the place, but I had questions for the admissions guy there, and the discharge planners at Kaiser the next day.

Well, before I could get a call to anyone, they were blowing up my phone. "Sara is going to Rossmore tomorrow". Wait, WHAT? I haven't even OK'd the place, gotten the rest of my information, Kaiser hasn't looked into Evergreen. "Well, What is the PROBLEM?" I nearly fell over. Um,no problem, except that I don't have all the information yet, I was told I have until Friday to get all my info and get back with the discharge planners, and I called them with another location to look at... "Well, they just aren't going to do that..." Ok...so we never really had a choice and getting a chance to check out a place that will be responsible for her very life amounts to use getting a walkthrough to say we've seen the place. Warm fuzzy I do not have...

Well, long story short...we don't have a choice. The head of discharge planning basically gave me the ok to look at other places to get me out of their hair/way/whatever. They never had any intention of placing her anyplace other than what they came up with. Ok. I get that. But it would have been nice not to have my time wasted looking in earnest for a place closer to home for her, while also exploring trying to bring her home. It is just that one other thing on my plate that I truly didn't need to have.

So, after getting hounded by the discharge planner for the day I finally just said "Yes, go ahead, send her anywhere you people want to shove her. Since it doesn't matter what I know, of feel, or say...Since it doesn't matter if her family feels it will be safe...Since you've already told her before me...Since you seem so in an all fired hurry to get her out of your way...Yes...Send her whereever...Just tell me where to show up..."

Then I called Gina - our social worker. I was losing it (yes, again) about all of it. I had gotten a call from her Speech Therapist that "now since she's moving to Rossmoor that Kaiser doesn't want to pay for the computer out of the main funds, but out of skilled nursing funds...and they want to keep the computer in hospital inventory so it won't follow her anyway." I got this call maybe 20 minutes after saying Yes to moving her. Amazing. Takes weeks and weeks for physical therapy to start, but it takes 20 minutes for durable medical equipment necessary for her communication to get punted over to another group of people to review...

I know DQB doesn't like it when I am critical of Kaiser or the process or any of that, but I think even SHE would be shaking her head at this and getting on the phone screaming on Sara's behalf. But, saving her from that headache, I do it.

By the end of the day I had been talked to by no less than 6 people trying to peel me off the ceiling over this. Listened to everyone's explanation about their understanding of their facet of the big picture, and to how little they understood what my issue was. So, I ended the day telling the head of discharge planning that I was going to station myself in my daughters hospital room the following day, between the door and her bed, so that maybe I could find out what is really going on and what is being said - as that is my responsiblity as her Mother and Conservator.

A few minutes later I get a call that she has a slight temperature and they've decided not to move her until Tuesday... Way to go Sara. She probably heard everything going on (since they were doing most of it in front of her) and got upset and spiked a temperature. Good girl.

I saw her the next morning and we talked about all of this. The events of the day before scared the hell out of her and we both had to settle down a bit and talk it through.

So, she and I talked about our worries and plans and what the step means. We talked about how we're going into this change not quite knowing the path it is going to take us, so we will just make our own - our own care plan. Then, instead of treading water, we can swim for something.

On Friday I met with Gina the social worker and expressed again my fears on her behalf - specifically that the communication computer was going to get lost in the transition or that we'd have to start all over again and she'd just been waiting to get a voice back. I told her that it was a safety issue to me, as she was not going to be under direct view of the nursing station, and on 6:1 nursing without the ability to call for help if she needed suction or was in pain. That is what truly scares me. She agreed and spoke with the right people at Kaiser. Since it is their internal process that is going to hold up the computer for payment and ownership, the DME department and the manufacturer of the device decided to rent us one for Sara's use in the interim.

The representative delivered it to us on Friday night after driving straight down from Redding. So, now we can help Sara get a voice back, be able to call for help, be able to share her thoughts and express her desires. She and I have quite a bit of programming to do (yes, I am reading the books!) but we are both greatly encouraged at her finally having a way to express herself. That, to me, seems like the hardest part of all of this - being muted in a vocal world...

The wheelchair, on the other hand, is not going to get ordered just yet, by Kaiser. It will be dropped in transition and I need to start putting together a list of everything she needs and start working the payers to cover it, or find ways to cover it myself

But, she's ready to move on. She is feeling strong...feeling like it is time for the next phase of her recovery. Its hard to believe that tomorrow she leaves ICU. She would have spent 119 days in Intensive Care - one day short of 4 months. It has been an eternity and a single moment at the same time...