I guess this will have to cover twice as much ground! Sarah is steadily climbing back onto a plateau. They have completely revamped her drug regimen and it has helped her relax and be very active in her care. Little things-- like putting on her own vest, pushing the bedside table out of the way as she stands up, brushing her teeth at the sink-- have resurfaced as routine. She isn't struggling to just sit up in the chair without falling asleep, or just wanting to be asleep rather than dealing with the challenge of the day. This is not to say she doesn't have some wicked downturns in her day, but she now has the 'up' periods to balance it out.
Yesterday was a challenge of wrapping up MA paperwork and making sure her medical coverages are still tracking. It is exhausting to make sure all the i's are dotted and t's are crossed, rather than the other way around. It can be especially difficult when Sarah struggles to clear her mind because of high CO2 levels, drug induced haze, and lack of sleep, on top of having non-stop doc visits and therapy procedures fill her day. Sometimes we get out wires crossed on where to find documents or what information is time sensitive. I can't begin to imagine how someone would do any of this alone!
Yesterday, was the usual rollercoaster, but she walked to the atrium twice and had a nice surprise anniversary gift from Chris. 6-year anniversary gift is either electronics to distract from transplant wait or a diamond trach cover. Sarah can now distract herself with Angry Birds, electronic Sudoku, and Netflix. She was VERY excited to have some new toys to pass the time.
Not much more to share that is different than the other days. Today when I said I should leave before she gets sick of me, she told me it was too late for that. Nice to have her back again. Again.