Alex had an appointment on Friday to see our friend Nancy Thompson about the issues we've been having with her g-tube. Basically, for the last few months she cringes when I put her extension tube in. Last week we changed her g-tube out and once we pulled the tube out she started bleeding - something that's never happened in the 6+ years she's had her feeding tube. I thought she had some granulomas that had built up, but when Nancy took her g-tube out, that wasn't the case and she was bleeding again.
So, right now she's on a medication to coat her stomach that she has to have 30 minutes to an hour before her feedings - sounds like no big deal, but it's so much of pain given that she's already on an four hour schedule - and if you miss the window to give her the medication, her feedings get off schedule by over an hour and it's really just a vicious cycle.
Obviously her stomach has some kind of irritation to cause the bleeding - the question is why. Two of the possibilities are an ulcer, or food allergies now that she is eating by mouth. I get so upset thinking about the possibility that it's food allergies. We have worked SO hard over the past six years to get where we are that I think how cruel will it be if it turns out that's what this is. Not to mention the fact that she finds absolute joy in eating, it will really break my spirit if that's the cause. We have an appointment at 8:15AM tomorrow morning with the allergist to have her tested for food allergies.
She's got a head cold as well so she's really not in the best of moods. We took her to our neighbors house yesterday for their annual Easter egg hunt and here's a picture that pretty much sums up how she's been feeling.
So, right now she's on a medication to coat her stomach that she has to have 30 minutes to an hour before her feedings - sounds like no big deal, but it's so much of pain given that she's already on an four hour schedule - and if you miss the window to give her the medication, her feedings get off schedule by over an hour and it's really just a vicious cycle.
Obviously her stomach has some kind of irritation to cause the bleeding - the question is why. Two of the possibilities are an ulcer, or food allergies now that she is eating by mouth. I get so upset thinking about the possibility that it's food allergies. We have worked SO hard over the past six years to get where we are that I think how cruel will it be if it turns out that's what this is. Not to mention the fact that she finds absolute joy in eating, it will really break my spirit if that's the cause. We have an appointment at 8:15AM tomorrow morning with the allergist to have her tested for food allergies.
She's got a head cold as well so she's really not in the best of moods. We took her to our neighbors house yesterday for their annual Easter egg hunt and here's a picture that pretty much sums up how she's been feeling.
1 comment:
I'm dying to know what you find out tomorrow. And I'm really hoping and praying that it's NOT allergies.
Thinking of you!
Christy
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