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Today is the day

We are back from our 2 weeks away from home and the much anticipated/dreaded day is here. Today, we will be saying goodbye to the GJ tube that Raya has had for the last 9 1/2 months and going back to a regular G tube. I have very mixed feelings about this. On one hand, I know it's a big step forward towards normalcy. Being fed directly into one's small intestine is not normal. :) It will also mean that she doesn't have to walk around with a bag of bile hanging from her stomach anymore, which will make it possible for her to do some things we haven't let her do yet, like go to nursery at church. Bag-o-bile isn't something to mess around with, you know. :) The theory has been that the J tube passing through the pylorus (opening from stomach to small intestine) has been responsible for the excessive bile in her stomach, so if that's true, removing it should alleviate that problem. I hope so because while we were gone, she started spitting up again and bile was what kept coming up. It landed on me several times and probably ruined a couple of my shirts and definitely ruined a couple of hers.
On the other hand, the GJ tube has been a security blanket for me. I have been able to put her meds in the J tube and KNOW that they're going where they need to and that they'll stay in. The formula goes in and stays in, and even if she were to get sick, I could still keep her hydrated through the J port. Without the J tube, there's the possibility that she could start vomiting again, which includes meds, formula, and anything else she has in her stomach. I think that having the meds go through the J tube for all this time has been a huge factor in why she finally stopped vomiting, so that part doesn't sit well with me.
All worries aside, I do think that after an initial adjustment period, she will do fine with G tube feeds. After all, before her tube change in May, we did have her to the point where she was getting an overnight J feed and then bolus feeds to the G during the day and she was doing fine with that. (not gaining much weight but was tolerating the feeds) And of course, I am SOOOOOO looking forward to getting rid of that ENORMOUS "low-profile feeding tube device" and going back to one that actually IS low-profile! I know a lot of parents of feeding tubes feel like the Mic-key G tube button is huge, but after spending 9 1/2 months being paranoid about her big fat GJ button getting caught on things, I can't wait to go back to a G tube that I could put back in myself if it happens to get pulled out.

Good riddance, big huge GJ tube

Welcome back, nice little G tube!
(PS these are old pictures)

Comments

  1. Good thoughts and prayers for a quick and speedy proceedure and recovery. AND, hope she tolerates it very well.

    ReplyDelete

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