Home at last!

Charlie ended up spending 2 weeks and 1 day in the hospital. I thought at first she'd go home after just a week, but then she needed to go back on bipap and everything got pushed back. We're all happy she's home, but it's pretty overwhelming! There's just so many more supplies and I'm still figuring out what we need, which things we need back ups of, and how often we have to change certain pieces out, etc.

She now has a home ventilator (and a back up ventilator) in addition to her suction machine, feeding pump, pulse-ox, vest system, and concentrator AND they are talking about wanting us to have a bedside suction machine in addition to her portable one. I won't say no to that, because goodness knows the portable one can be touchy. But the amount of equipment is just...stunning. I'm sure people who are not accustomed to Charlie and other kids like her would be a little (or a lot) freaked out by their first visit to our home.

Our first night at home I got about 3 1/2 hours of sleep. Her vent kept alarming APNEA all.night.long. Ugh. The thing is, when she doesn't breathe for a certain period of time, the machine kicks in and does it for her. Plus she's on the pulse-ox, so if she's really in trouble, we'll know. Thankfully her home nurse figured out how to silence that alarm. The respiratory therapist wasn't thrilled when she found out, but I reminded her that we keep Charlie on the pulse-ox all night and that satisfied her. People need to sleep around here!

I'm still trying to figure out the logistics of getting her out and about. I took her wheelchair to the hardware store today to replace a few missing screws and the guy was nice enough to tighten everything else that was loose too. We're going to need that thing in tip-top shape to handle the weight of everything we are going to have to bring with us when we go out. Eventually I'd like to have her off the bipap during the day, but it might be a little while before we get there.


Hi Mom!

She was in the hospital for Easter, and they brought her a little gift bag with a few fun things in it. My favorite was the froggy hat:

One of the first things I did after we got home was dug up Adrian's old tubie bear and gave him an upgrade:

Adrian still hasn't been over yet. Grandma called and said he's complaining of a headache and his cheeks have been flushed, so we are going to wait that out a bit before we bring him around Charlie. I know she's dying to see her brother!

Oh and Miss Stinker has already figured out how to make the vent alarm to get our attention! I haven't caught her doing it yet since she always does it when I walk out of the room, but she's popping the vent circuit off her trach. I think she's using her chin, because I did catch her pushing her chin into it and she stopped when she realized I was onto her. LOL I had a little talk with her about how she shouldn't do that, so we'll see if that helps.