We've had a lot going on

I know I haven't updated in a few days, but there's been a lot going on. First off, Peanut's eating!!! On Friday the ST came in to do a swallowing test. She passed it with more than flying colors. She ate an entire bagel, graham crackers, pudding, and applesauce. She exceeded her ST's expectations. So she moved onto a soft diet for the weekend. However, she's beyond that now, eating cookies, pizza, sandwiches, etc... I mean, she didn't eat for 2 weeks!

Then today, she finally has a lot of her voice back. Well, she's speaking. It's not really "her" voice! LOL! It's a little squeaky at times, and some words get lost or too soft to hear, but you can understand about 80% of what she's saying. She's just moving so fast. It's great to hear her! And so many of the nurses her never had her before, so they don't really know her, the REAL her!! They are getting to see that now and love it!

Now, thenot so good things... We're still having problems getting the fluid out of her lungs. They had toincrease her lasiks again today. But we're trying to get her up and moving a little bit more. She's sitting up in a chair all day too, so that helps. She's not just laying in bed, where it's so easy to fall asleep.

The other issue is her apnea. We're starting to believe more and more that it's a central cause. There's obstructive sleep apnea and central. The obstructive is caused by something in the airway, weight, narrow airway, things like that. However, thecentral apnea is something nuerological. Last night, she would close her eyes and within a few seconds, she was crashing. I wasn't here, hubby was. But he said that once she actually went to sleep, it was a perfect night. No crashing, no alarms, all great. So why she crashes in the middle of something, when she just closes her eyes for a few seconds, that's what we don't understand. And since they've removed any airway obstruction, by having the trach as her primary airway now, it should help with that.

She's also been on the vent all the time now too. They had too many problems with the C-Pap, the backup vent, and things like that, so she's just now on the vent, but with low settings. Which is fine, although she may end up going home on the vent too. We'll work with that when the time comes.

We're also still working on getting the home health care lined up. Apparently, they told hubby today that they will have to come out to the house, check the facilities, possibly do some electrical work, just crazy!! I couldn't believe that all of this is going to have to happen. And they also said that if they can't get her nursing care for at home, they would possibly move her to a nursing type facility. That thought doesn't thrill me at all, too many other issues in that environment. But, we'll see when that time comes.

Nutty Buddy is doing a little better. He's been going to school this week. Of course, he still cries going every time, but his teaher said he recovers within a little bit, and has good days. He still has issues with lunchtime and the lunchroom, so I think I will just send more of a snack thing for him to eat. Since they have lunch at 10:30, which is kind of early. Then he can have a lunch when he gets home.

Soo... we're just winding down for the night. Watching Mulan, which I had never seen. She got her hair braided today, and her nails done too! Purple and green nails! LOL! But so cute!! She just looks so much better. Even though there's still so much to take care. It's not easy too. The days seem to be longer, more difficult, and more demanding, with no end in sight. Not what I really envisioned for our little Peanut! But she's such a fighter!!