Still here

Well, I can tell you where we're not - home. Where, oh where might we be? Oh yeah, room K739. Better than K414 (ICU) but a far cry from our own house and our own beds.

The day started off looking good. Harper was up and alert. She ate a little in the morning, and was asking to make brownies.

I went home and picked up Finley from a friend's house, and she and I hung out for a few hours. It was another nice little break. We played a little, worked on a puzzle, and returned the rented Rug Doctor. Then we headed for the hospital to do brownies.

Harper was napping a little when we arrived, and Grandma showed up just after we did. Harper had been down for another chest X-ray. After a little prodding, she got up, and we walked to the family area. In there they have an oven and some basic cooking utensils.

She tired quickly again, and after baking the brownies we returned to her room. Then came the next challenge - changing the dressing over her central line.

The psychologist visited yesterday and has been concerned about Harper's anxiety. With the change of her dressing coming up the next day, she wanted to do some pre-discussion about the plan. Not surprising, Harper shut down and wasn't interested in discussion it.

Turns out, Harper did awesome. The dressing was a Tegaderm, which means she can see through it and can see all the stitches holding her line in place. Despite this, and after a dose of Ativan (yay Ativan!), she all but removed the thing by herself. I was actually shocked and incredibly pleased. Despite her worry, she did it, and now she knows it's not that bad. That's a good thing, because we're going to need to change it at home later.

Later in the day, the resident came in to see Harper. I cornered her on what is keeping us here. After a half-assed a ill-informed response that I didn't buy, she checked with the attending, she came back with the real reasons:

1) edema - she is still swollen, in her legs and abdomen; they are also still concerned about her lungs - the chest X-ray shows improvement, but there is still fluid there, which is a recipe for pneumonia; they are still giving Lasix about daily as well

2) low albumin - they are giving her albumin because her blood level of albumin is low. This is likely related to her lack of nutrition over the last week. Despite our efforts to push food, she has eaten little, and its been hard to argue with her knowing that she is so uncomfortable in her abdomen.

3) oxygen - she has been using oxygen at night, as her blood oxygen levels have been dropping while she sleeps

If we can correct the above 3 things, we can go home.

After accosting the resident, I then talked to the nurse. I expressed my discontent with the regular and too frequent wake-ups going on at night. Different people coming in at different times, apparently not talking to one another. I threatened to begin refusing treatment if they didn't work on bundling visits. Apparently my message got through, because once the night nurse arrived she came in and walked us through what would happen overnight, and Harper is expected to get 5 hours of uninterrupted rest. Prayers Answered. God really does help those who help themselves (and complain occasionally).

They have also ordered Ensure for her, and we pushed it all evening. We even mixed it with chocolate ice cream to make it colder and taste better.

We're determined to get out of here, and Harper's general approach of delay and avoidance isn't going to do it anymore. We're going to be pushing her now.

Lets get this going. Tomorrow at this time, I want to be almost anywhere but - Still Here.