A 2nd full day at Children's this week to replace the ever-problematic Mic-key tube with a BARD button. The principle behind the latter is that since it doesn't come with a balloon that needs inflating once in his stomach, it shouldn't tear, deflat and then come out like the Mic-key leaving me doing emergency changes on Venice Beach. Unfortunately and truly awful to watch though, was that the BARD which can only be inserted by the nurse at the GI clinic, had to be forced in the stoma hole which sent shooting pains through the surrounding nerves. Reuben doesn't often visibly complain and so it made it all the more awful to watch. They're basically inserting a feeding tube into his stomach that's too big to fit with the idea that once it's in, it's not going to come out for about a year. For some, it's a regressive step to go from Mic-key to BARD but we felt we'd exhausted other options. After just a few minutes of comforting though, Reuben's back to his happy, smiling, laughing self again. An amazing boy.
http://www.upstate.edu/uhpated/pdf/peds/gastrostomybutton.pdf
This was followed by 4 tiring hours (and that was fastrack) in ER as Reuben's paediatrician wasn't available as we waited for trach cultures to explain the appearance of blood in his secretions. He's back on Cipro antibiotics again to treat the emerging trachyitus. But here's the rub. The Cipro clogs the newly inserted BARD in a way it didn't with the Mic-key. Jason changes Reuben in the night to find the extension feeding kit has come out and the bed's soaked. No idea of how much formula Reuben has taken. Frying pan fire.
3 comments:
Oh, poor Reuben and poor you guys finding the bed soaked with formula is never good...hope you find a way round the problem with the bard button clogging and it works out better than the mic key.(((hugs))
Alexis xx
That was awful finding the bed wet. I remember it happening while I was there, and you've no idea how much formula he's taken in, so important are his night feeds. Hope you and the hospital can find a solution to this and that it's a rare occurence and that things get back to a reasonable normality for you all. Love G.
myu tube is the same some things dont work with it well talk botu diff extensions that worked for me
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