I walked into Sarah's room yesterday and saw a completely different person than I left on Tuesday afternoon. She was busy doing things sitting on the edge of her bed; dressed, corked and ready to go. She got up and paced around organizing some of her things. I met her current nurse, and watched her interact and direct the nurse about what she needed, her plans for the afternoon and thoughts and directions on her medication. She was in charge and in control of her domain.
She had plans to get outside to the courtyard and had taken a shower earlier in the day. She told me that she had discovered things about switching between vents and corked that make it easier to exercise and walk around. We sat outside for about an hour in the courtyard on a glorious summer day and I think it gave her a nice break from the inside of a hospital room.
Later in the day, the nurse (who also works in post-transplant sometimes) was coaching her on trach maintenance and ways she will be able to take care of things herself-- like coughing stuff out the trach rather than her mouth or using suction and that she will be able to suction herself when she is ready. The next time she had to cough, she was already implementing things herself.
Each of these little steps have added up to some pretty big changes, but it is still frustrating to her that she has lost so much. Standing at the sink, brushing her own teeth before bed-- she was irritated that she was so out of breath and that such a simple event took so much effort. It is a double edged sword. She knows she needs to give herself credit for coming so far, from laying at death's doorstep one week ago to being mad that standing and brushing her teeth is a challenge. That frustration, though, is what will fuel the fire inside that keeps her going.
The talk of 'going home' is done for now. They told her if she ever gets to the point that she comes and asks to go, they will be able to get her there, but no one is going to tell her it is time for her to leave.
Her focus is on reaching her transplant, and because that is not a fixed point in time it is hard to know how to wrap her mind around it. If you knew that sometime between the next minute and next month, a person would walk up to you and say, "Ok, time to go get hit by a car, hope you survive, and then go through recovery," how would you deal? I'm not sure it is possible to find the right way to wrap your brain around that.
She has been reading the posts herself and has enjoyed all of them. It means a lot to her to have the support and love of so many, and she asked me to pass along her deepest gratitude. She will not be able to have visitors now or for quite some time after the transplant, so this a great way for her hear from all the people who love and support her.
There are so many small facets of life that will have to change for her with the transplant and she is trying to implement them now to make them her new default. She won't be able to eat at most restaurants, or eat food prepared by others unless she knows a strict list of precautions in preparation have been followed, she'll have to avoid shaking hands or touching doorknobs without immediately washing hands, hugs and kisses will be few and far between, and she will often need to wear a mask in public or anytime she visits the doctors office. Her immune system will be suppressed, so anything that can make her sick, scratch her skin, or be a origin point for infection needs to be avoided at all costs. A cold can put her back where she is right now. All these things will be a constant challenge and will replace the religion of her vest and nebs 3 times a day.
But, all in all really great progress. Just waiting for that person to walk in the room, and the world to go boom.