Friday, April 3, 2009

May Day will be a good day.

That’s what I am telling myself.

I have forever loved May Day. Spring has sprung!

Mom and I used to make the beloved baskets. You know; the ones with Dixie cups and pipe cleaners: popcorn in the bottom and M&Ms on top. Nora and I go overboard with our May Day baskets. Only young once, unless you’re me and feel like a teenager in an almost 40-year-old body!

But on this May 1, I might just age another ten years. We repeated Elliot’s chest exam yesterday. He’s cleared for surgery.

This May Day, instead of handing out goodie baskets, we’ll remove Elliot’s gallbladder, biopsy his liver and complete both an upper and lower endoscopy. The surgeons, of course, are also suggesting a gastric feeding tube. “Perfect timing,” they say. I’m more than a little bit leery. Eenteral feeding? Well, he does swallow, so we may be creating a monster…

The kiddo does not eat anything solid; he won’t open his mouth for the spoon, the cracker, not even a lollipop. He generally takes his Pediasure from a baby bottle in stride, but do I provide him with a crutch so he does not feel the “need” to ingest anything?

Personally, (again, momma’s gut instinct) I think that Elliot does not eat solid foods because he is simply in pain. I mean, he’s dealing with an abundance of gallstones. He HAS to be in pain. All adults that I speak with that have suffered with gallstones speak of pain. They speak of appetite loss. They say that in a nutshell they just feel horrible.

I know; we have gone down the road of oral aversions based upon cognitive delay, habitual behavior, even autistic tendency. And sure, Elliot does indeed exhibit some behaviors that are found on the autism spectrum. “He has not LEARNED to eat.” Eating is a learned behavior. But, will he learn if I hook him up to a feeding pump? I don’t think so…

So, what is more important: immediate weight gain or long-term solutions? At a loss.

May 1 is the day. Risk is plenty. But, considering that they have opened up my boy’s spine; he’s kicked the hell out of much worse (you all know the details), I think we’ll be fine. The surgeons are smart. You know me; I can no longer tolerate foolishness.

Nora and I will extend the holiday. May Day will be Sunday for us! Elliot will be home; we’ll have much to celebrate.

3 comments: said...

I will be praying for your little guy.

Stephanie said...

Once he has had the surgery, you can still teach Elliot how to eat orally. And use the tube as subsidized feeding.

Pam said...

Hey sweetie. I say let them put in the feeding tube. Rhett still eats orally, but he simply cannot take in enough to sustain himself. We have taught him to love crackers, and fruit snacks, bannana's, even peanut butter and jelly.

But at night we just calculate what calories he didn't get through the day, mix up his formula, and plug him in. He gets his feeds over an 8 hr period.

Since we have done this he has been able to kick these viruses much better because he is getting proper nutrition.

Plus, when he gets sick, he can't get dehydrated just because he doesn't feel like eating. I can put all of his meds and his liquids in a little at a time to keep him hydrated.

I know G-tube sounds scary, but really, I think it will be a life saver, and will cut out on your worry a little.

It's so much easier to focus on oral feeds when you KNOW that he is getting all the nutrition he needs regardless.

If you have any other questions call or email me.

Love you guys, and you are always in our thoughts and prayers.