Wednesday, February 22, 2012

New stuff!

I got a decent tax refund this year so the first thing I did was splurged on some new stuff for Charlie. These are things that aren't necessary, but would make our life easier. I have no idea if insurance would have paid or not, but they were fairly inexpensive so it wouldn't have been worth the fight anyway.

First, the most exciting! A hand-powered suction unit! We have a suction machine, of course. Here are my problems with the current's loud, it breaks easily, it's heavy and bulky, the battery slowly starts dying and then gets to the point where it won't work at all unless it's plugged in. If it dies and the home care guy can't be at our house for a few hours, I'm standing over Charlie with a bulb syringe, trying to keep her clear, which is a lost cause with a bulb syringe. You just CAN'T get her clear with it! But I gotta try anyway, right? Because I don't want my kid to drown in her own secretions. She probably won't die after a few hours, but she could develop pneumonia, which also probably won't kill her, but it sure as heck will land her in the hospital for a week! But I digress. I hate our suction machine.

This little unit was suggested to me, and I honestly don't know why I waited this long to get it. Maybe I thought it wouldn't be what I was hoping and it would be $50 wasted. When your income is very small, $50 wasted is a LOT. $50 spent on good stuff is worth it, but I will seriously get depressed over $50 flushed down the toilet. But I have a decent I risked it. BEST PURCHASE EVER.

Seriously. If you are reading, and have a kid that needs suctioned, go buy one, like yesterday.

It's light, it's quiet, it clears her as well as the big machine, it's easier to clean, it has no battery to die on us, and since it has less parts, it's probably less likely to break (although I can't be positive of this). If it lasts 6 months, it will have outlasted the heavy duty machine, because like clockwork, ours needs replaced or needs some kind of maintenece at least every 6 months.

I'm considering buying an extra just to keep in the car.

The only "downside" is you can't use the typical suction catheters with it, because those require you to have your thumb over the hole, and you can't do that AND squeeze the trigger, AND aim the catheter. I've heard some people just put a bit of duct tape over the hole. I just happened to have some funnel tip catheters buried in Charlie's supplies that I snagged from the hospital, and they work like a charm. I'm looking into whether we can get those delivered instead of the kind we get now.

Ok, second most exciting thing! I got a fingertip pulse-ox. Again, it could save us a lot of hassle. Her current pulse-ox is bulky, the battery is nearly dead, and we can't lug it everywhere. It's an extra cord to trip over. I deal at home, but out and about, I don't want to deal with it. I had heard that the fingertip pulse-ox things weren't great for little bitty fingers. I didn't even go on anyone's recommendations, I just picked one that looked good and went for it. It works FINE. Today I checked her when she was hooked to her regular pulse-ox and it was dead on, even though that was on her toe. I don't know if we just got lucky or what. But I'm glad I risked it.

And next, I got a new car seat for Charlie! Surprised? Probably not. LOL We just got her Britax Traveller a couple of months ago. I didn't realize just how much of a pain that beast would be! Adrian is getting to the age that I'm needing to drive him and his friends places and I need to be able to fit 3 across the back sometimes, or at the very least, be able to *easily* remove her car seat to put another booster back there. Neither of these things are possible with the Britax. The Britax is still being used though. I put it in her nurse's car (she has captain's chairs, so it doesn't matter how big it is) since Charlie was in a My Ride in that car and still dangerously close to outgrowing it. The My Ride is being passed down to her 2 year old, who was outgrowing HIS car seat. Good deal right?

Charlie in her new car seat, a Safety 1st Complete Air:

Don't mind the sad face, she was getting over a bug.

I also got an otoscope, which I haven't really got a chance to play with much. I did look in Charlie's ears and my goodness she has some serious wax build up! I can't wait until the day that she's acting "off" and I look in her ears, see an infection, call up the doc and tell him exactly what's wrong and how I know. And he'll likely give us the option of antibiotics (without even coming in) if I think she needs them, because he's cool like that, and he knows I know my stuff.

So onto the heavy stuff...

We've seen the sleep clinic doctor, the pulmonologist, and the ENT about the trach decision. We went ahead and scheduled it, but I'm not 100% yet. I know I can call and cancel any time. The ENT doctor knows I'm still iffy. Let's just say I'm 98% sure right now that I want to do it. I think I at least want to give it a shot. There's always the option of removing it later if it ends up being a disaster.

So March 26 is the date! I will be sure to update with any changes, or anything new. I've been slacking on the blog because there just hasn't been a lot to say until this past week. And I seem to have misplaced my good camera, so I don't even have good pictures to share! LOL

1 comment:

Anonymous said...

I had (as an adult) a trach for a while-around 6 months. I realize that my situation and Charlie's are entirely different, but my ent told me that there is always, always a risk that somebody who has a trach won't be able to do without it. I don't remember exactly what was said, but it has something to do with learning to breathe that way and forgetting to breathe normally. He thought it was unlikely for me, since I was in good health (except for the thing that required it), but he wanted to be very clear that it was a possibility. And I actually did have some problems when they gave me a smaller trach as an intermediate step, though probably mostly from panic.

Anyway, I'm not trying to be negative about the trach (I know I still sometimes miss it as I breathed a lot better with it) but I would expect that this is something that would have been discussed with you. I just noticed your comment about it coming out, so I worried a bit that it hadn't...