5 days ago
Sunday, June 7, 2009
Rhett has been eating by mouth really well the last few months.
So much in fact, I haven't been using his g-tube except at night every now and again, and of course for meds.
We rely heavily on his g-tube for meds. He is awful at taking them.
Ever seen Spiderwick Chronicles where Hogsqueal spits in Jared's face to give him "The Sight"?
Ya. That's pretty close to exactly what Rhett does when you stick any type of syringe into his mouth.
But for serious, do you blame him? Not only does he have some awful tasting meds, but he has had so much of them, that he is pretty much traumatized for life.
I can just see him now, an old man with no teeth...(cuz his teeth are crap now, so they will probably be rotted out of his head when he is all old and wrinkly too.)...spitting his meds all over us. By then I'll be old and wrinkly too, even more so and I'll probably be senile as well, so I'll just smack him on the head with my purse.
Who knows? Maybe between Andy, Rhett, and I, we will all have three recliners in a row in our living room, and each have our own oxygen concentrator sitting beside each of us. It will be like our own little symphony of oxygen.
Humm, Humm, Poof, Humm, Humm, Poof, Humm, Humm, Poof.
Maybe I can spit my meds on him too.
Dang. I have so much to look forward too. I am getting overly excited here......
So anyhow, the G-tube.
We haven't used it for feeds much, but lately Rhett seems to be developing an oral averison and I'm not quite sure why. There are only certain things he will eat, and I know he's not getting the nutrition he needs, because he is starting to loose weight. He is down to 31.8 lbs from the 33 lbs he was a few months ago.
He has a fascination with chips. Or as he calls them blips.
He will eat blips all day if you will let him. The second his beady little eyes are open each day he is asking for blips. He loves blips and salsa. He can't get enough of that stuff.
He also likes Chicken in a Biscuit crackers.
Those seem to be his staples in life.
He will still eat bread, and will eat a peanut butter and jelly sandwich every day of his life if we would let him.
That and fruit. He is in love with peaches.
But that is pretty much it. He has never really eaten meat, but he used to love carrots, corn, green beans, fruit snacks, cabbage, cauliflower, pizza, spaghetti, mac and cheese, and eggs. But now he just refuses them. Turns his nose up, and throws them on the floor.
I get so sick of just watching him eat chips.
I have withheld them from him to see if he would eat a meal, and he still refuses.
This has been going on for about 2 months now, so today I decided that his minimal diet needed something more. If he wants to play the "I don't want to eat game," then I will play the "You are totally back to bolus feeds through your G-tube during the day buddy, game".
He's gotta have some type of nutrition don'tchya know.
I know some kids go through spurts where they will only eat a certain food, but this has gone on for so long, and I have been trying to get him to try different things, and failing for so long, that I have taken things into my own hands.
My only thought though is this. Is it just a phase? Or is it something that I need to address with his GI dr, or his ped?
I know they are going to tell me just to continue what I am doing, but could there be a reason that he doesn't want to eat? I don't want to put him through more testing, and any time I bring something like this up with any dr, they always err on the side of caution given Rhett's history, and will poke and prod him to no end, just to be on the safe side.
Some days I want him to just "be" ya know?
He tolerates his feeds well, albeit he needs a little more burping, which is fine, I don't mind venting him one bit. His stools are normal, he has normal wet diapers, even more so now that he has his diuretics on board again....holy schmoly can that kid pee.
I dunno know what to do. He has been really grumpy, like head spinning in circles grumpy, for the last month, but I wonder if it is related to this or if it's all behavior.
He misses school. He asks to get on the bus every day.
He will start summer school on the 16th of this month for a few hours two days a week, so I am hoping that will help.
Do I read into things too much?
Sometimes I wonder if I should just leave him alone and let him be a typical kid. But he's not typical health wise, and some things can't just be overlooked.
Maybe his recent heart issues are at the center of all of this not eating stuff. In fact now that I have emptied my brain, it makes sense. When he had his heart issues before his surgery we struggled to get him to eat as well. He had little if any appetite.
For Pete's sake he was only 7 lbs at 4 months old.
Huh. Maybe I answered my own questions.
Have you ever had a kid who stopped eating for no apparent reason?
I would love to hear your experiences.
at 11:17 PM