Sara's been struggling the last few days. She's had a fever for the last 4-5 days and having increasing trouble with her breathing. Yesterday they decided to transfer her back to the ICU to try and get a handle on her sepsis.
She has an infection somewhere. We don't know where. They've cultured everything - blood, stool, urine, sputum. She had a minor something in her urine, but most people have it off and on. That isn't causing what she's got.
We're starting to look at the unlikely locations of infection now - her PIC line, maybe her shunt. Both pretty far reaches, but something is going on. They are even culturing her for an internal fungal infection, since both her boyfriend and father have recently had them.
Despite this latest battle, she is in really good spirits. We are still focused on her coming home, albeit delayed. I have a chart up in her room with all the steps that have to happen to get her home. There is stuff for me to do, her to do, discharge planners to do, medical personnel to do. Its quite comprehensive - distilled from the loads of notes I get from the different entities. I thought that it had to be easier to see if it was all on one page...
She is doing better controlling her communication computer. The rep from Dynavox was there last week and did a couple of tweaks, and support sent me a couple of more. It seems to be working better. Sara still doesn't use it very often - she'd rather make someone use the manual letter board. I finally had to get tough about it and tell her that now that she had the tools and ability to do it herself, she was going to have to. She understands that. And the only way she'll get faster on it is if she uses it.
I get so many questions from people about "how does she use it". I should make a short video. It's actually pretty fascinating to see her do it, and amazing to think that this technology is not only out there, but in the hands, er, eyes?, of my child.
I got a broadband internet card for her and installed it on the machine. That way, when she's ready to try, she can go out to her favorite websites and see what's going on. I have to get the listing from her regular computer and program the shortcut buttons.
Well, I am a day and a half behind on my work,so I best get to it. I can't start another week behind because this database at work blew up. I gotta keep everything moving forward, everywhere...
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