Saturday, April 28, 2012

1 month!

I can't believe it's been a whole month since Charlie had her trach placed!  The hospital stay seemed to drag on, but the rest of April just flew by!  We're all adjusting quite well and Charlie still has not had a single autonomic storm.  Even her minor autonomic symptoms are few and far between.  She'll get flushed or mottled and uncomfortable, but usually putting her back on the vent for a bit fixes her right up.

She's been tolerating just oxygen during the day, and sometimes all night as well, though I usually put her on the vent at night just to give her a break, plus the warm, humidified air is good for her lungs.  She's also tolerating periods of time off everything!  We just put a little cap over her trach called a humid-vent that recycles the humid air she breathes out, essentially acting as a nose, filtering stuff and keeping her from getting dried out.  It's also good at catching loogies she spits out of her trach. LOL!

 Adrian has had no issue accepting all the new stuff.  He's actually been unbelievably helpful with her trach cares. On some mornings we don't have a nurse, so I have to do all the breathing treatments, vest, stoma care, and trach tie changes myself.  I like to pull Charlie up on my lap and tilt her head back over my leg, so I can get to everything better, but this makes it difficult to move around and grab what I need.  So I have Adrian stand there and help me.  He pours water and peroxide in a cup, gets out the q-tips and wets them, hands them to me, throws them away, then empties the cup and exchanges the water, repeat process. Turns the suction on and of about 10 times because she's always coughing junk up during all of this.  He's even held her trach in place while I changed her trach ties!

We've been on a few outings breakfast a few times and also to visit a friend an hour away.  We're hoping to go to a party tomorrow!  It's a little more of an ordeal than it used to be, but not too bad.  If we're going very far, we bring the back-up vent just in case, but otherwise just bring an oxygen tank, so not much has changed, only I'm more paranoid, but I'm sure it will get better with time.

Here's Adrian with the kitty carrier he and Grandma found at fits his beanie cat perfectly!

Charlie and her trach buddy, Ava.  Ava has had her trach much longer, since she was 7 months old I think (she's the same age as Charlie), and her mom has been so incredibly helpful when I just don't know what I'm doing.  She even gave me some extra supplies the day after Charlie came home when I realized I didn't have a way to deliver her nebs through her trach!


sarah said...

I love the picture of Ava and Charlie!!

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