Wednesday, November 18, 2015

25 Days of Lillian (day18) A little more medical info

Tube Feedings.  Yeah, let's talk about it. Many people do not realize that Lillian is (for whatever reason) unable or chooses not to swallow most all foods.  She gets three tube feedings through the day and she is on a drip that runs continuously all night.  She has what is called a mic-key button that inflates a balloon inside her stomach, which holds it in place. We have a feeding bag that runs into a feeding pump and feeding tube that attaches to the button and voila...she gets fed.  She does drink pretty good, but not lots of anything and always something with carbonation.  I think it has to do with the way she feels it in her mouth.

We have to carry a replacement button, special syringe, extra bag, ky jelly,  and extension tubings at all times, because yes, her tube gets ripped out of her gut and it is generally very unpleasant for her.  We also have to change it about every other month or when it starts leaking and won't stay inflated. It's not a difficult process except when she is upset she is tense which makes it hard to get the tube reinserted.  

I don't think I ever thought she'd still be tube fed by the age of nine.  Keeping her healthy and just trying to keep food in her gut always took precedence because she had such terrible feeding intolerance.

She's on a metabolic formula and her feeding supplies cost close to three thousand dollars per month. Praise God for insurance.

I'm currently looking into real food tube feedings, I think it would be so much better for her to be getting real food and not a formula based diet.  I think it would help with her bowel problems as well.
When we do eat, we always make her a plate, but she tends to chew up and spit out anything she puts in her mouth.

She chokes quite often on most solids she chews even though she chews it up very thoroughly.

I'm grateful we have the ability to still provide her nutrition thru feedings, but there is a flip side to it as well.  The pumps can be very touchy and tubing gets kinked and ports get popped open...all of which causes mess and stress.  My alarm every morning for the last eight years is the howling beep of a feeding pump signaling it's finished.  It can, on some days, be my total undoing.  Just being honest.  I mean I never really thought we'd still be here and I'd still be mixing formula every single day at age 9.

A sweet friend once reminded me that I also thought she'd never be potty trained. So, when I'm discouraged or when the pump is driving me IN.SANE.  I remember her words.

It sounds strange, but I still get an extreme sense of amazed wonder and gratitude when Ezekiel eats.  AND, just to tell you how crazy I am, I've actually chased him around several times, trying to hook him up to HER feeding.....oh mercy, what a journey.

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