Hello.  We saw Cody's gastro Dr. today.  The Dr. and us (Don and I) both began with the expectation that the tube was a necessity based on Cody's downward slide in weight the last few months.  Both the neurologist, Cody's pediatrician, and the gastro Dr. agreed it was time for a feeding tube.

But oddly today the hospital scale showed that he gained 1 pound in the last week.  That surprised the Dr. and was enough for him to advise us to give it 2 weeks to see if *maybe* this is slightly turning around.  He said if we can just get him to start moving slowly 'up' again instead of down, we won't have to do the tube. 

He said if Cody had come in today, the same weight he was a week ago, he'd have asked us to admit him immediately and start him on the tube.  But since he gained a pound in 1 week, we are going to take 2 weeks, weigh him again, and if he has lost weight, we will do the tube at that time.  I appreciate this 'wait' because the feeding tube is no small endeavor. 

We talked long and hard about the big picture.  I told him that my life revolves around trying to get Cody to eat and drink.  That his seizures are worse.  And that I worry that with his mito disease, he's just not getting enough nutritionally to support his body.  He agreed with all of it - but acknowledged that for him to gain a pound in 1 week shows us that he can gain weight.  Granted, I gave him 'benecalorie' for the last 3 days - it's a supplement that adds 330 calories a day.  But I can't imagine that would make him gain a pound.  I've tried every other supplement known to man, and benecalorie seems to be the only one that doesn't keep him up all night with gas - at least not yet. 

The Dr. said 'something' made him gain a pound and let's see if it continues to trend 'upward.'  I was skeptical, but agreed to wait and see.  We're also doing a bunch of labs to see how he's doing overall. 

So we're all on the same page. We all agree that Cody is on the verge of needing a feeding tube for support.  But we're going to wait and see (if I push the benecalorie and Cody tolerates it) if we can get his weight up.  The stress of feeding Cody is a factor in the decision.  I'm already nervous about getting the food down him for the next two weeks.  It is constant striving - trying to get him to eat but not pushing so hard that he is turned off food for good!   But after hearing about the tube, I am sold on giving him one last shot.  The Dr. said for Cody - they'd first insert a nasal feed tube, tape it to his cheek and around his back - and he'd either carry a pump or, if he could tolerate it, we'd do syringe feedings sporadically.  With the pump, you can feed him slowly which prevents vomiting and other issues.  But it's cumbersome.  A syringe is quick, but some kids can't tolerate it apparently plus you have to refill the syringe a zillion times to get a full feeding done.  So the Dr. is nervous about how Cody would tolerate a tube coming out of his nose and taped to his cheek and I AGREE!  One swipe at it and he could pull it out in a second - what's to stop him!?!  But they start with a nasal tube for at least 2 weeks to make sure that Cody CAN gain weight this way.  Some kids just can't handle the extra food and vomit it back up because they've already reached the maximum amount they can handle.  In other words, Cody eats a ton - he SHOULD be gaining, not losing.  So that's a sign he may just not be able to get the nutrients out of the food he IS eating.  More food via a tube wouldn't help in that case.  So the nasal tube is a challenge to make sure he gains weight via a tube.  He's admitted to the hospital for 2 days while they insert it (while he's awake, mind you!) and then you take him home for 2 weeks.

If he handles the nasal tube and gains weight, they'd surgically place a tube in his stomach.  Now here's where it gets tricky.  Because of Cody's issues, and inability to understand 'no' - he would probably play with the tube site, or pull it out.  The Dr. said the only way to get the tube flat on the skin is to put it in with stitches (not even sure what that means!) but he said it's a more complicated procedure.  Then we'd keep a mesh bandage over it all the time he wasn't feeding. 

That's what we learned today.  I have prayer requests for a few specific things - that Cody would simply WANT to eat voluntarily without me striving so much to entice him.  Also, that it would be very clear at the end of this two weeks what the right decision is.  I see lots of pro's with the tube - like peace of mind - options - less stress.  But introduces new stresses as well.  So I'm not even sure how I feel about it.  One thing I know - I can't keep up this crazy focus on his eating.  Every meal is a surge to get the most calories in him in the fewest bites possible.  For instance, for breakfast I give him whole grain bread with almond butter, jam, honey, and coconut butter slatered on top.  For a snack I give him a cup of sweet potatoes with brown sugar, honey, olive oil, benecalorie and more coconut butter.  He will eat it all, but if it were up to him, after a couple of bites he'd be off and running because he just can't sit and attend to any task for more than a few minutes.  So I wind up chasing him around the house, or out in public, feeding him throughout the day.  I also grind up meats into his foods for extra protein and calories.  Lots of avocados too.  Sigh.  I just couldn't be trying harder to help him.  So all that to say, my prayer is that he will gain weight, AND that it will become more natural rather than stressful for me and for him.

There you go - our day in a large nutshell!  Thank you so much to those who emailed with input about tummy tubes.  This website is such a lifeline to me. 

Will keep you posted!

With love,

Shawna