Another thing I'm finding while editing the blog is that there are a lot of funny stories that we never had the wherewithall to type about but they are very much a part of the story. For the editing process Ive set up a new blog here I am reporting the edited posts as I edit them. I will be adding in some of those stories so you may want to come along on my stroll down memory lane. I will try to remember to post a link here when I do throw in a story. The blog is Chuplicates.blogspot.com and you're welcome to post a comment with some editing suggestions if you would like! Please don't let me put something in print with some stupid typo like there, their and they're! Friends don't let friends use incorrect grammar!
So, we did get to wean a little bit today at Dr Habermans office but not what I had hoped. We got to turn down her oxygen from 1.5 liters to 1 liter. Her co2 was 55 (normal is 35-45) so we couldn't wean her rate. Dr Haberman said that he was pretty sure her co2 was high because of her nasal congestion and that he is really pleased overall with her progress and for us not to get disappointed. Well, I have to admit that I had my hopes set high for a substantial rate wean today so I am a little bit disappointed but only because I chose to wait to do penny's weekly trach change until after the appointment and I think if it had been a fresh one her co2 may have been better. But honestly, she is doing wonderfully and I probably just need to cool it with the rushing. Its just that she is so clos to crawling that I really just want her to be freeeeee.
Since she won't be freeeeee for a little while, I'm trying by best to get her a rolling stand for her vent and humidifier so that when she's on the go all we has to do is push her little pole behind her (think iv poll but with a vent on top). She could roam the house just like Lydia does. She deserves that and I want it for her. The issue is that we are running in to some road blocks with the supply company and with insurance. They are "doing what they can" right now so I'm still holding that hope that we won't have to pay out if pocket for it. Its not cheap, but as a mother, 6 months of freedom for my child is worth every last penny I can scrape together!
On the other hand, sometimes freedom can bite you. I caused Lydias first bloody nose and fat lip last night. Our friend Callie was here bringing Christmas and birthday presents for the girls. You all remember Callie. She was Pennys first nurse and hasnt been able to escape us since. Well, we were talking and Lydia took advantage of my distraction and tried to sneak past me. I used my foot to try to scoot her back away from what she was heading for and her arms slipped out from under her and her little face hit the hard wood floor. Really the bloody nose didn't even bleed enough to run out of her nose and her lip was more...pleasantly plump than fat. But that sure didn't keep me from feeling like a total heel! Callie and Akeyvia both stayed calm while I apologized and apologized to poor Lydia. All Lydia needed to forget about her woes was for the dancing snowman to do his little dance again, but I was still shaken up. I had never caused blood for either girl before! Callie's response was "oh don't worry, I've caused blood many times for them and it's ok now." I guess that's the perk of having nurse friends who had the girls as a patient, no matter how mean I have to be, at least I've never had to get an iv on them!
"you mean there's a toy under the paper?!" -P
We gave Penny a candy cane just thinking she would wack stuff with it.
"hey look at us! We're just a couple of one year olds standing around in our pajamas!"
I'll start.
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Two beautiful gals!!
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