It's been 7 weeks today!!

It's hard to believe, but we've been here for 7 weeks now! It's crazy to think about all the stuff that we've gone through. But it's nice to see that there's an end in sight. Tomorrow is the day we head over to CMH. The ambulance will be here around 1 to pick us up. So we just gave hubby another load of stuff to take home. We had so much stuff here. And 5 minutes before he got here to pick up the stuff, Child Life came with more stuff for Peanut & Nutty Buddy.

The one thing that has made life more difficult is the visitor restrictions they've put into place. I guess other hospitals have done this before and for longer, but ours just started it yesterday. So I showed up with Buddy and they told me no more visitors under the age of 18 on the floor. I was pretty pissed since there wasn't much I could do. He was already there with me and I wasn't going to leave him outside the floor in the family lounge! It really irked me that there was no notice. And it's all cuz of this crazy flu crap! Yes, I realize it's serious for some people. However, you take precautions, get the vaccine, and let us have our son with us!! Oh, and there's a lot of volunteers who work on the peds. floor that are teens. They're no longer allowed to volunteer. Same with the high school groups that come in and do projects with the kids.

The worst thing is they did this the day before the Halloween Party! He cried the whole ride home that he was INVITED to the party!! He just doesn't understand these rule changes. I'm glad that it's happening now though, at the end of our stay. I couldn't imagine dealing with this for 7-8 weeks. She still went to the party and parade, and had a lot of fun as a hula girl! They went trick or treating throughout the floor and got lots of goodies. And most of it was NOT candy! Which is great! Then they did some crafts, ate some pizza, and she came back and took a nap!

Anyway, she's been doing good as usual. She's getting better at balancing the time on her valve and the time on the trach collar, so we don't have the mucus plugging up. We just have to watch that. And she's even been able to talk over the trach sometimes, without the valve on. She's been getting out of her room a lot more too, doing things in the playroom.

She is worried about going to CMH tomorrow though. But we've been talking about it, reminding her of all the great Child Life people that will be there, and that the nurses and doctors will be nice too. Just like here. But it's understandable that she'd be nervous. I'm nervous for her, I've never been there either. We're comfortable here, everybody knows her here, she's a star! LOL!

I got her room all ready for her to come home. We were able to organize the spare room next to hers to store all the extra supplies. They should be delivering them this week. We finished up all our training here, have our emergency bag ready to take with us, and are almost set with the nursing care. Still waiting on the Medicaid waiver to be finalized, and hopefully it will be approved soon and it will be all set. But the home health company thinks they should be ready to start staffing our case when we get home.

One thing that continues to amaze me is the way that everybody just knows and loves Peanut!! You can't walk through the halls with her without someone wanting to talk to her. And it's the nurses, respiratory therapists, food delivery services, janitors, all of them! As many have described her, she's an "old soul." She's not like most kids when you talk to her. She has such different thoughts than most kids. I've seen the most serious of doctors actually laugh when talking to her.

Last week there was another patient who was going to be receiving a trach the next day. The nurses asked hubby if the mom could come talk to him about it. I guess her son already had a g-tube, so she was familiar with caring for son, but she wanted to know more about the trach and what it was like. So he was telling her about it and Peanut was interrupting, as usual. Hubby told her to just wait so he could talk, and Peanut's response??? "Hey, I'm the one with the trach here, let ME talk!" How can you argue with that!?! It's just that most 6 year olds aren't ready or willing to talk about it. She also has been covering her trach at night, while she's sleeping, to talk IN her sleep!! Dr. A. was laughing so hard about these things.

So while she may drive us a little crazy at times, it's nice to know that others truly enjoy her and love being with her. She has a big sign up in her room now, from Child Life, for her leaving tomorrow. And then she'll get to have a going home party when she's discharged. And right now, that appears to be November 10th!! Which means only 10 more days!! Oh yeah, and she lost yet another tooth!!!