While it's only been three days since the procedure, I think we will look back at September 25th as the inflection point when things finally started to really get better for Maddie. And by extension for all of us.
Since then, she's had several retches (usually when trying to lay on her back with anything in her stomach). She tries to throw up but can't, and unfortunately that gets uncomfortable... her face turns red and she gets hot and sweaty... after a few minutes it subsides and she's back to her normal happy self. Usually.
Last night she woke at 2am with intestinal gas... 45 minutes of screaming and thrashing until she got some bubbles out and passed out. Followed shortly by us passing out.
She able to tolerate being on her back for a short time; a few minutes, it seems, without getting gaggy. Sometimes we wonder how she manages to sleep on her back at night (her crib is inclined, but still).
And all day long we're still venting her... about hourly she'll need to push out a bubble of gas from her tummy, even though we're not putting food in her belly anymore.
|Cute new GJ button!|
Still -- this is all WAY better than it was before we changed from the G-tube to a GJ tube. Really. It's not night and day... but it feels like a whole different and more level of insanity.
Before, she could generally only take a few seconds on her back, not minutes. The gas was at least 20 times as prolific; so we spent 12+ hours a day holding her and venting her. Couldn't set her down and couldn't leave her unattended for a minute because she was so prone to retching... all day you were on pins and needles vigilantly listening for the warning sounds of a bad gas bubble brewing.
You know that feeling when you step out of the car into a really cold wind and you just grit your teeth and mostly hold your breath until you get into the house... yeah it's felt like that for the last year or so.
So while we still have a long ways to go and while we're still figuring out a new schedule and the mechanics of GJ feeding, I'd say this is finally on the solid upswing.
Gotta go... time to feed her again...