Timmy's tube & What Timmy can do

In answer to questions about Timmy being fed by G-tube... yes, he is still fed that way. This is how he receives his nutrition.

Will he always be fed this way? We hope that he will eventually learn to eat by mouth. Part of it depends on his cognitive growth and interest in eating. He is very orally defensive.

Does he eat anything? Timmy will taste foods if it's his idea... when we're not looking, or if he finds it particularly interesting. He likes to gently put marshmallows to his lips and might gum one for a while. He might taste soft ice cream, or frosting, sometimes swallowing, sometimes not. He'll taste a sucker and let the sticky run out of his mouth for a while, then discard the sucker. He'll put a toe in his mouth, or someone's shoe. He'll lay on the deck and put his lips on the boards. Things we don't want him to put in his mouth he decides to explore. But at least that's something.

What does he do at supper with the family? He sits with us and has a plate and a fork or spoon like the other kids, and a little of each of the foods being served. He usually plays in the food (thinks spaghetti is hilarious) but doesn't taste anything. He just wants to be included. But we always hope...

What do we do with him at restaurants or ward (church) socials? The same thing that we do at home, by sharing a little of the food on a plate for him. But often at church potlucks he just wants to be social with everyone and mix and mingle with the people. He wants to do the same thing at restaurants but we try to keep him at our table. ;o)

Are all kids that are fed by G-tube going to continue to be tube-fed for years? No, it depends on the child and their circumstances. Timmy also has severe reflux and besides a double major heart defect at birth he was a preemie with Down syndrome (low tone) and his intestines were dying. They fed him by a line for a time and didn't expect he would survive. When he did, and after he'd grown enough, they repaired his heart defects surgically and he was hospitalized again shortly after that, because he was filling up with fluids. Timmy had such low tone that he didn't have the muscles that held his jaw together well. He was refluxing and losing every meal. He was on medicines round the clock and feedings round the clock, starting with the kind that had to be pumped into him by portable pump though a nasal tube, taking one hour to do it, then starting again in two hours. He was eventually off of most of the meds and the pump feedings at night progressed to electric pump feedings at night and then to no feedings while he sleeps. But he is up to feedings every two hours again. His Nissen surgery to tighten the muscle between his throat and stomach loosened a few years back and his refluxing began again in earnest. At this point he refused to cooperate with any oral feeding therapies. He began to reflux again and vomit. The gastroenterologist refused to redo the surgery. He still refluxes daily and can vomit, which he does every now and then but the Reglan helps.

But many children use the G-tube for a short time to help them through a difficult medical period and then are able to move back to eating, not becoming orally defensive. Timmy never did really eat or drink from a bottle. It's hard to understand how someone can get through life without a drink of water.

Is it hard, gross or embarrassing to feed him? In public? How do you do it? The embarrassing part may be that he doesn't eat like the other kids in the restaurant... and I sometimes worry that people will think we don't care about him because he's not eating or we didn't order him a meal of his own. If we do feed him by tube in the restaurant it sometimes draws interest but nobody has to see the site of connection to his G-button, it can quickly be covered by his shirt.

It's really easy and quick to feed by tube. Some people are afraid (as was I at first) and think they'll be grossed out by the stoma, or opening to the stomach. You quickly get used to it, it's not as scary as I thought. You simply plug the tube end into the little hole in the "button" and pour the Pediasure into the large syringe at the top of the tube... I usually pop the top of the syringe with the palm of my hand to free any air bubbles and then it begins to flow down into his stomach by gravity-- it just goes down by itself. He gets 8 ounces per feeding, followed by a little water, then you plug the stopper back into the hole in the button, pull down his shirt and off he goes to play. The only part that's tough is if he doesn't want to cooperate and is grouchy that day-- sometimes he might cause me to spill the formula or he might kick the tube and spill. Or if something is malfunctioning with the G-button and he's getting a lot of leakage from the button-- that causes him a lot of discomfort. Because of the possibility of spillage, I usually take him to a spot where it wouldn't matter. But other times I must act quickly and feed him where I am.

He became sensitized to tape so we don't tape gauze around his stoma anymore or he breaks out. Instead we have him wear undershirts to catch any leakage and change them twice a day (or more if necessary). Onesies were nice when he was an infant.

The other problem is to keep him from playing with the stopper. He often kisses the tubing when the milk is flowing, similar to a baby loving his mother's breast or his bottle. :o( I've heard people say that tube feeding is so easy that it's a danger because then we aren't motivated to teach the child to eat. This saddens me and gives me unearned guilt. I sincerely miss feeding my child the normal way. There's something important about that kind of nurturing. I would have him eat if he would! We never give up.

I'm sure there are therapies out there that can help Timmy. He did have feeding therapy until he reached the age of three, then speech was continued at school. I pray that God will bless him with the right people to help us help him.

What can Timmy do at 6 years?

Timmy can:

• Give great hugs!
• Show love to people.
• Dance! Holding hands with Ella or going in circles by himself, often moving his legs enthusiastically
• Play with toys.
• Love his sisters and brothers, showing much gentleness.
• Imitate Joel imitating movies.
• Look at books (very closely because of his poor vision) and turns pages
• Keep his glasses on for longer periods of time
• "Sing" along in church, sometimes very loud
• Say Mama, Papa, Gabe, Wuh for Lora, Joeh for Joel, Ella, oocy for Lucy, Bibi for baby or himself, Bob for Spongebob, DDD for DVD, NO!, Kay for okay, "es" for yes and Mer for More, up for up/help/open, shoe, off, hi, hello and bye.
• Scribble in many varying patterns
• hold a crayon or pencil
• Open and shut his G-button port
• Get his tube and can of Pediasure and bring it to me
• Go to the bathroom by himself on the potty chair and pull his elastic-waist pants down and up
• Go up and down stairs by himself
• Get in and out of his bed by himself
• Stay focused on an activity for longer periods of time, especially if he can see it
• Climb on play structures and slide down slides, loves swinging on swings with help
• Laugh and giggle like a silly heart
• Wrestle with Joel
• Give kisses
• Put a sock on his hand and pretend it's a puppet
• Try on other people's shoes
  
• Yell very, very loud
• Bend himself into a pretzel with his legs behind his head and rest comfortably that way
• Recognizes familiar people and shares his joy in seeing them