We know for sure that Andrea still needs oxygen. Her nurse today tried to take her off it, and she managed only about 15 minutes before her sat levels went too low and her breathing rate shot up. It's frustrating, because the oxygen is a lot to manage. In addition to being connected to a "concentrator", Andrea will remain on a "pulse ox" meter and an apnea monitor. She's used to them, because she's connected similarly in the hospital, but they'll make it hard to get out and about with her. She has doctors' appointments and clinics after discharge and we need to bring the equipment with us. The best thing about taking her off oxygen today was that at least we know it's necessary for her to have it at home, at least for a while.
I've mentioned before that Andrea is on "feed on demand" and can eat as much as she wants. The problem with that is she retains fluid, and needs to be on a diuretic. Diuretics can cause problems with electrolyte levels in her blood. Yesterday, when her blood was tested, her potassium level was low. We're worried, because once she's home, we have no way to monitor her levels. It's scary to lose the security of all the tests.
Andrea lost a tiny bit of weight yesterday - 15 grams. All things considered, that's nothing to worry about. She's still over 5 pounds, and looks good. The concern will be once she's home, to make sure that she continues to gain weight.
I think the house is finally ready for her to come home. Her room is done, thanks to massive efforts from Mom and Dad and Uncle David. We finally managed to get a glider, so there's something to sit on when we're feeding Andrea. In the beginning, we're planning to keep Andrea pretty much restricted to her room. The concentrator for her oxygen is in her room. We have a 50 foot cannula, so we CAN move around the house, but the monitors have much shorter leads. We'd have to unplug all the other cords to be able to leave her room. Until we work out logistics, we're staying in one place.
"Keep on going, and the chances are that you will stumble on something, perhaps when you are least expecting it. I never heard of anyone ever stumbling on something sitting down."
Charles F. Kettering