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Saturday, April 30, 2011

Have I mentioned how much I hate bile leakage?

Because I really REALLY hate bile leakage. I'll spare you the pictures this time but I went to put Raya's jammies on tonight and lifted up her shirt to find the gauze around her GJ tube completely yellow (dry though) and blisters under & around the tube. I cleaned her skin really well and slathered on a layer of her aquaphor+questran that the GI doctor gave her for bile problems such as this. :)
There's been a lot more leakage lately from her tube and I haven't figured out where it's coming from but I think the J port on her tube might be leaking around the connection. Or it might be leaking from around the tube. I'm also wondering if the balloon that's on the inside of her stomach holding the tube in place has a leak in it because I replaced the water in it a week or 2 ago and tonight when I checked it, there was 1/2ml less than what I put in. That might not sound like very much but when there are only 5ml holding the balloon in and it deflates by 1/2ml, it makes a big difference in how tightly the tube fits. At least now I know to keep a closer eye on it. I keep wondering when something's going to hit the fan. Probably because things have been so incredibly stable & dare I say easy with Raya for a couple of months now and I'm not used to that. I'm not being cynical or anything but when you go for such a long time where you're putting out new fires every day and then suddenly you realize it's been a month or two since anything big has come up, you just wonder what's next & when. I'm trying to not think like that though and just enjoy how comfortable life with Raya has gotten. She's still got a busier schedule than all 3 of the other kids combined but we're used to it now. :)
On a more positive note, we have increased the amount of formula that's going into Raya's stomach. Now she is fed 650ml overnight in the J tube, 125ml during the day in the J tube, and 125ml formula+125ml water in the G tube. We do boluses of about 75ml into the G tube every half hour or so until it's gone. We were only giving her 50ml formula and 190ml water, so the half & half mixture is a big step forward towards giving her straight formula into her stomach. So far there hasn't been any vomiting with the bolus feeds since we've increased the ratio, so we'll keep advancing her towards straight formula.
And now for a funny picture. One of Ray-ray's favorite things to do is sit on her "big" sister Kaida. I laugh every time I look at this picture though because Raya makes Kaida look so small!

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