A few days rest...

I'm sorry if I kept people in suspense with what has been going on. It overwhelmed me pretty hard and I needed to settle my mind for a few days. That's also why no updates in a few days.

Sara is doing great. The nurses on the ward are always saying how amazing she is and how hard headed she is. They are right on both accounts. She continues to slowly do what they said she never would.

Most notably today...they reduced her ventilator pressure support again, by 2 points. That means she is down to 10. She only needs to get to 6 before we can start doing some sponteneous breathing trials (SBT). An SBT is where they basically just pull the vent tubes off her traecheostomy and she breathes room air on her own via the tube. They typically cover the traech with a light cover filter. Then, after a period of time, they remove the inner cannula from her throat, and let the hole close up. I have to tell you...if she can get off the ventilator that would be HUGE. On the vent she only has about 6 years to live - off the vent she can live 40+.

On the discharge front - I have a meeting tomorrow with the discharge planners. Basically, our social worker got the hospital back in line with regards to what we're doing. The MediCAL program does pay the nursing, but they didn't tell me that I had to apply for it - it is not automatic. So I researched everything for that and am doing the application. I also, obviously had to get going on finding a place to live. The other day when all this came to a head I left work and that's all I did. I found the perfect place for us. Single story, plenty of space for a wheelchair to navigate - a large combination living/dining space I can turn into a hospital room and therapy room to accomodate her. Place to put my home office for consulting and working from home. Family room to gather in. Open kitchen. I think it would be the perfect place to bring her home to and help rehabilitate her. It will also be nice to have space for her friends to come by and hang out with her. Her social needs have been barely met, but that is most understandable. I should find out today whether or not I got the house. Cross your fingers.

Otherwise, I have just been working, cleaning the house, and playing air traffic controller. I've gone to see her a couple of times since all this happened - but I missed a few nights. My sweet boyfriend covered for me, and expained to Sara that Mom was getting beat up a bit around the edges and needed to sleep. And that is exactly what I did - came home from work, napped, got up, worked, went to bed. He's been real good about trying to get the positive back in my speak...as my being negative about anything is a pretty good indicator that I am discouraged.

So...moving on, I got to get back to work. Rested, encouraged, able to be there for Sara and Michael...

Daniel is going up to the hospital today to surprise her and hang out on a Tuesday. I can just imagine the big smile...