Resting day...

Sara had a very eventful weekend. I thought it might be good to give her a nice quiet day to rest.

She did. I called both the day and night shift nurses to check in and they both told me that she's doing very well. She was in the cardiac chair today and tolerated it well. Her oral secretions are down a bit, which is good. No fever.

She's in bed now watching TV. I told her that her brother and I will be up there tomorrow.

Tomorrow I have a meeting scheduled with her doctors, the social workers, physical medicine & rehab and a discharge planner. We are going to discuss planning for her next few steps and make sure we're all on the same page for her care. Initial indication, since she is still ventilator dependent, is that she needs to go to a sub-acute care facility. It is one step above nursing home, one below hospital, but with no rehabilitation. But, before I get ahead of myself, that was just in discussion with social work with what they thought the next step may be.

I went to SRJC and got her student records. I also went to Santa Rosa Memorial and ordered a copy of her medical records. I've got quite the library of Sara-info growing. Her medical record from UC Davis is going to be huge...

I went by Pecoraro's Martial Arts on the way home from work today. I had not been in their new facility. Very nice. The Pecoraro family (John, Adam and Carol) are such amazing people. They've helped me with Michael before he went to Hanna (gave him a responsibility talk and held him to it), mentored Sara in life and martial arts for years, watched our family grow and change. And now they, and the entire Pecoraro's family (instructors, students), are standing in support of Sara. They've asked me to communicate to Sara their collective love, support and belief in her - I will do that tomorrow when I see her. They have something very special planned to honor Sara. I will let you all know about it after the fact, as it is something very personal for her.

I went and looked at a 4br single story house today. Not going to happen. The place was nice enough but it wouldn't fit. Basically I have to decide if Mike and I stay here until she is nearing being able to come home or visit, or move to a single story place and gradually setup for her, or move to a two bedroom place and save some money until she can come home or visit and then move. I guess the planning tomorrow will tell me more to go with. Its hard not knowing what to do, or what not to do.

I spent some time this evening looking at communications systems/software for Sara. It is the worst thing not being able to "talk" to people at all. That is what makes her saddest, I am sure. I talked to Kaiser today about what we could do about that and basically I have to apply for SSI and MediCAL, etc. for her and see what they will pay for. Meanwhile, I'll try and do better working with her and the letter board. It is literally the blind leading the blind here. I can't believe, however, that the second we knew she was locked-in that they weren't working with her. I guess in that regard I should have gotten military on them...but didn't. Actually, she probably couldn't have tolerated even trying to learn anything until recently. I do have to remember that although we've known for a month that she was locked-in, it has only been in the last couple of week or so that she has not had any major issues and been relatively stable.

You realize, as soon as we give this girl a way to "talk" that we'll never hear the end of it... :)

Ah...I can't wait... my world is way too quiet without Sara yammering away about something or the other...I look forward to hearing what she has to say after all of this...