Tuesday, July 19, 2011

Finally, another update!

A seven-year old's birthday party, a used car purchase, and visitors from a far away land have all conspired to create a whirlwind and whisk away a week. I arrived back down in Rochester yesterday to re-assume my courtside seats and was greeted by someone who looked another shade closer to the "healthy" Sarah. I know it is a long slow climb, and she has had frustrations and setbacks, but she has steadily moved up that hill to a better place. She is walking short distances without a walker, and last night she walked a very long distance pushing the wheelchair before she had to hop in and let me race her around the hospital.

She did receive some less than fantastic news about the length of time she might expect to wait. Her CF doc was in yesterday, and he has been gone for a while on vacation. She has developed a rapport with him over the years and felt more comfortable asking many of the questions that were preying on her mind. He outlined that she might be waiting some time before the lungs show up. The original timeframe we were told, (3 minutes to 3 weeks!) is really not accurate. She is looking at 3-6 months, with the understanding the match could truly come at any time. It takes some time to recalibrate your mind around that big of a change-- and to realize the room you're in is going to be "yours" for a while. Sarah took the news well and I think is trying to craft her approach to the wait.

She is trying to spend time down the hall at the atrium, exploring places at St. Mary's and she will even (eventually!) be able to go across the street to the Honker for a real dinner out. Her doc has recommended that she start to take charge of her room and her care, moreso than she has so far. I have seen many changes in her activities in just the week that I have been gone. She showers without assistance, walks across the room to grab her pj's, transfers her oxygen lead to the tank to walk, and a dozen little things that last week she couldn't do on her own.

Unlike many patients in the hospital, she does much of her own care. She is hesitant to usurp too much from the nurses and respiratory techs, but as she feels better she will need to take on more of the components she traditionally did at home. This will help her not always be waiting for someone to do her basic vest and nebulizer therapy. She is hesitant to rock the boat as she doesn't want to agitate the people she depends on for so much, especially the respiratory techs. But too often she is the one agitated as each tech who comes in has a different approach and she spends as much time helping some of them understand how to do her meds and therapy as it would take for her to do it herself. This can be repeated with each shift change. (This is not to say anything bad about the techs, as they are just not as familiar with CF patients-- as many of them don't live long enough to be frequent visitors)

Sarah is getting stronger. She is preparing herself for a long wait. Let's hope it is the shorter end of the spectrum.

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