"Help me wake up"

Sara has been working with the physical therapist, myself and today with her father spelling things out on the letter board. I brought in a new board with better contrast and she was spelling things out so much quicker today. Well, she keeps spelling out the same things.

"Help me wake up."

Tracy called me, concerned that maybe she doesn't understand what is really happening to her, or the gravity of her situation. I assured him that she had expressed this before, and I was sure she understood, but would query her again at length.

So, at the hospital, I started talking with her about it. I asked her if she knew she was awake. Yes. I asked her if she understood that she was quadraplegic. Yes. I asked her if she expected to wake up from this. She said Yes. I told her that this was reality. I asked her if she understood that. Yes. I asked her if she liked that being the reality. No. Did you have a stroke? Yes. Do you understand that stroke damaged your brain? Yes. Do you know that the area damaged allows you to talk to your limbs and move? Yes. Do you think you are going to walk out of the hospital. Yes. No, Sweetie, the reality is that you are not. Do you understand that? Yes. Do you understand that this is the way you are right now? Yes. Do you understand that you are doing things that they said you'd never be able to do? Yes. Do you understand that we don't know how much you'll be able to do? Yes. Do you want us to help you? Yes. Do you want us to keep looking for ways to help you? Yes. Do you want us to stop? No. Do you want us to recuscitate you? Yes. So you want us to help keep you alive? Yes. To keep fighting? Yes. Ok...well, we will fight as long as you fight. We'll keep looking for ways to help you. But you have to understand that medicine says this is it...there's nothing magical and miraculous out there. Do you understand that? Yes. Are you ok with that? Yes. Ok. then we are too.

Her grandmother was there and watched this whole interchange. I may have a few questions reworded, but this was basically the conversation. She still seems to understand the gravity of her situation. She understands that she is there, and awake, but still keeps spelling "help me wake up." I think it speaks to her mental state, specifically her focus. She seems to be taking the approach that parts of her brain and body are asleep, or offline, and she has to wake them up, and we have to help her wake them up. Unfortunately, it is a bit concerning when she spells this out and you wonder if she thinks its a big dream (or nightmare, as it were...)

I discussed this also with her physical therapist, as Sara spelled this out to Rachel also - twice. The second time she got clever with us and spelled "I need to be woke" instead of "help me wake up." Then when we realized she had basically said the same thing, she grinned at Rachel and I, as if pulling one over on us. I got a little ticked off with her and told her that she shouldn't waste her therapy time toying with us. I told Rachel that I am going to start asking her questions that will force her to spell out answers and check comprehension, cognition and memory at the same time. I'll write down the questions and answers in our therapy log in the room. And, if it seems like she is having an issue with reality or coping with her disability, then we will request a psychiatric consult for her. Rachel noted that despite her spelling the same things out, she is doing so with the new board so much faster and we may have our new system worked out.

On the infection front...we are just waiting and seeing if she spikes any fever before discussing antibiotics. They changed out her foley catheter today, as it was kind of nasty. They continue to change dressings on her traech daily, inner canula daily, dressings on her PICC weekly, and dressings on her PEG daily.

Due to the real risk of infection, and her growing different things in cultures, please PLEASE if you visit her - wash hands, use the alcohol sanitizer before touching her at all, do not kiss her or put your face too close to hers. If you have been exposed to anyone who is sick, or may be, please do not visit until we're sure she's ok.

Doctor-Pulmonology came and talked to me at length about the vent, her lungs, etc. He also talked about maybe recommending that Sara be transferred to the ICU at Kaiser Santa Rosa. She still needs acute care treatment for her respiratory issues, and they have those services at the Kaiser here. So, after the first of the year, we may be exploring another option. As long as her level of care is comparable to where she is, and therapy options are there and comparable, then it is certainly something that would be great. I'll keep you posted.