The end is nigh!?!?

I don't think Xina wants to talk much about it, yet; she does not want to get her hopes crushed again. So I will. She was told today by head doc that AE will be watched over the next week and if all remains the same or improves, we can start care-by-parent on Friday and take her home Monday. Judging by how well she is doing, I can't help but feel excited.

To start the process, they have DCd her lasix in favor of keeping on with the Bumex. It is also potassium losing, so AE will still be given potassium additives. This is the main thing they need to watch, as it's been her diuretic maintenance that has seemed to cause the most volatility in her health the last couple of months. They have also changed her feed schedule, upping her intake and omitting the 1am feed. By next week, if all is going well, we'll probably have the schedule changed so that the 9pm feed gets pushed back to 11pm and the 5am feed gets pushed back to 7am - that being more conducive to our sleep patterns.

Today, she's been bopping between 1LPM and 0.75Lpm, depending on her position. She does well on 0.75 if she's on her belly or side, but on her back she tends to have a little bit of trouble. Our hope is that she'll get stronger maintaining this pressure and move down again next week.

She had her first real speech therapy session today, though she was patched at the time and Xina thinks she was a little overwhelmed by both things going on at once; so her ST didn't go over well. But they'll be back next week, and we'll get some hints from them to use when they aren't around.