Thursday, July 9, 2009

Tomorrow is the genetics appointment and I'm sooooo nervous. I've been prepared to hear "Yes there is something wrong." That's the easy one to accept. I've been mentally preparing myself all week to hear, "We found absolutely nothing wrong." THAT is going to be the hard one to swallow. I think I'm just going to go in 100% expecting it so I don't cry when they tell me.

Anyway, I got more info on the botox injections. They want to put her under general anesthesia and intubate her. I'm *agonizing* over this. We don't KNOW that the botox will help, even a little. And general? Are you kidding me? The problem with intubating her is that there's a good chance this will turn ordeal. It's supposed to be quick...intubate, put her under, give the injections, extubate, go home. Yeah, I can almost guarantee you it won't be that simple. For one thing, they don't understand that Charlie REGULARLY sats in the low to mid 80's. So they'll be freaking out because they can't get her "to baseline", which they always seem to think is high 90's (maybe for *healthy* kids it is). And even worse, what if she can't come of the vent at all? Charlie's pulmonologist warned us that she may let the machine breathe for her. Since she's so bad already, she may be tired enough not to want to try to breathe on her own anymore.

So best case scenario, it turns into an overnight ordeal because they don't understand what is normal for Charlie. Worst case scenario, she won't come off the vent at all and they'll want to trach her and I'll say no and take her home, knowing that she spent her last days in pain from a procedure that was not even a guarantee.

So I'm starting to think this isn't a great idea.

Anyway, we had a good day yesterday. I had 9 kids at my house, 10 if you count the one that is still gestating. It was originally just one friend coming over to try one of my car seats in her car before she decided to buy one. Then another friend wanted to come over and check her daughter's seat. She moved her to a convertible and is loaning me her infant seat. Then another friend came over to buy Charlie's newborn and small cloth diapers. And that wasn't even all. One friend was planning on coming and couldn't make it. Craziness. Charlie loved watching all the kids running around and it was cute because the older kids would come and get me when snot would start running down her face.

So here is Charlie in the borrowed infant seat. She LOVES it! The sides support her really well. In every other car seat, she has enough room for her spine to bend all over the place and cause problems. I'm sick of rolling prefolds to prop her in place! Too bad she's close to outgrowing it! She has about 3" over her head, which gives her 2" of growing room. She could fit in it for weeks or months depending on how she grows. A lot of people assume a seat is outgrown when "their legs are too long" but this is not the case at all! Even in an infant seat, their legs can hang off as long as their head is 1" from the top of the shell. Charlie's legs hang off, but she fits in every other way. This seat goes to 30 lbs and she's only 21.

I think it will make it easier to get her in and out of the car. She's so long and floppy, I keep hitting her head trying to maneuver her into the seat, and then you have to be super careful her tube doesn't get caught up on something and get yanked out. So now I can get her settled and comfy in the house, then haul her out to the car. WHY I never considered an infant seat before, I'll never know. I guess I just assumed she'd be big like Adrian was and clearly she is not. He had long outgrown this model when he was her age.


Amy said...

i'm gonna throw in my 2 cents even though i know they don't matter (esp since my only knowledge is what you've written). just from what you've said about the botox it doesn't sound like its worth it to do.

isnt the SS1/SR32 just awesome! thats what we used for Collin and i only used it till he turned one (when he switched to his MA - RF of course!) but i put him in one at BRU the other day just to show a friend how to properly buckle a child and he still fit, he was pretty much at the 1 inch but he technically fit and hes 20 months. i knew it was a long lasting seat but i was pretty shocked that he still fit it

Sherrie Bee Bop said...

Good luck tomorrow! Call me when you know something please!

I agree with Amy on the botox... doesn't sound like it's worth it. Trust your gut on this one, like you always do.

sarah said...

I agree with Amy and Sherry Bee Bop. My friends and I always say that if you lose sleep over something, then God is probably trying to tell you something. It sounds to me like the cons of the botox procedure are weighing heavily on your mind. If I were you I would cancel/postpone the procedure...

Amy said...

Good luck tomorrow, I'll be keeping all of you in my thoughts and prayers.......deep breath!!

The Bjorns said...

Any word yet? How did the appointment go?