W're out of the PICU!!!!!

Yesterday, Peanut was finally moved out of the Peds. Intensive Care Unit!! Only 27 days there! UGH!! But now we're in another room, still on the good, new floor, with a room that's even bigger. Also a few less restrictions, like the curtains and door can be closed. She's also on the LTV which is the vent she'll have for use at home. Some issue with it in that the tube pops off her trach several times in the night. But otherwise, she tolerates it just fine. And she's off the vent for most of the day now. Only if she seems tired or working hard to breath. And Dr. A. even wants her to stay on the trach collar for the first hour of her sleep tonight.

Now, the other issues are coming to light... trying to get the Medicare application taken care of! That was an exhausting process, but it's started! I can't believe the amount of paperwork, agencies, and people that we have to work with. We have to apply for Medicare to get assistance to pay for Peanut's home nursing. The insurance denied any benefits for that. It's not part of the plan, so they sent it to a review, and they denied it. No surprise there. But we have the appeal phone number to call. Otherwise, they'll be paying $3K/day for her to stay in the hospital until the home nursing is set. She NEEDS that since she'll be coming home on a vent, at least for sleeping at night.

Anyway, so I had to go to the Public Aid office yesterday, which is very out of my comfort zone. It was very odd. But it's done, and hopefully things will move along quickly. Then another agency is helping to get all of this coordinated and such. It's all a very unusual process though, someone told me that there's only about 400 kids in the state on this waiver program.

Now, the HMO won't pay for home nursing care. We're in the application process for the Medicare waiver, but that will take time. And they said it may come to the point where she wouldn't be able to stay in the hospital, but she can't go home without nursing care. So they would send her to 1 of the 2 children's nursing care facilities around here.

Hubby went to look at the one, and it's only about 2 miles from our house. It's an older building, about 6 kids currently there, one at least with a trach, a couple on a vent. They have a 2-1 nurse to kid ratio. Staff is well trained, classroom for school kids, camera monitored system, playroom, and other things. BUT, she wouldn't be in a private room. Plus, they really discourage parents from spending the night, so that the kids can get better, more independence, something like that.

Now, I sent Hubby because being a little more scrutinizing, I knew he'd look harder at things. He said there were a couple things he didn't like, but the good were more than the bad, that was certain. I'm just really not happy about having my daughter spend her days in another facility. One that we won't be at 100% of the time. And one that is not directly involved in her care, know what I mean? I just don't know what we should do!?!

Of course, it's all going to depend on who will pay for this care too? If the HMO will pay this, then why not nursing which is cheaper? And if Medicare is ready to kick in, then again, why not for nursing at home!?

Other than that, she's doing fine. Still not able to talk though. Dr. W. will be in on Monday to look at what kind of trach he should get so that she can talk again. But the apnea seems to have subsided quite a bit. Plus, the EEG finished yesterday, the 48 hour video one. And hopefully that will give us some answers. We think it picked up these shakes and tremors that she has. So we'll see!

Things are just getting a little old and tiring... This constant back and forth, sleeping in the hospital, not getting good sleeps, same food every day, it's just a lot to keep going on. But we're just doing it, and hopefully we'll have something good one day!!