Thursday, May 19, 2016

Eating Real Food By Mouth!! - Adventures in Tube Feeding

Mr. Boy had his last day of Preschool today and this year was no less incredbily life-changing as the last school year. From the very first day in August, he has been different. He started eating food!!!

A little reminder:
When Mr Boy was 3 months old, he had severe reflux and was losing weight. The doctors gave him a feeding tube and that was that. For the first 2 years Mr Boy continued to projectile vomit his feeds an average of 10 times a day. We tried every specialty formula on the market to no avail. At age two we started a Blended diet of simply blending up real food and putting that in the tube and the vomiting immediately decreased to 5 times a day and for the next two years it decreased until last Spring (2015), when the vomiting completely ceased.

Wore this NG tube for two years
taped to his face before getting G-tube
directly in his stomach which is what
he has now.
He was hooked up 24 hours a day, so Dave made this platform so Mr Boy could drag his formula and pump around wherever he went since he was too small to carry it on his back.
Years of vomiting and not wanting to swallow food for fear of vomiting, left him a little too scared to swallow solid foods. But August of this year, Mr Boy started his second year of preschool and happened to be in the one class that eats lunch during preschool. I was a little annoyed at first, because I feed Mr Boy at home in the tube anyway and now 30 minutes of his 2 hour 45 min preschool day would be wasted on a futile activity. But I was WRONG. It only took 2 weeks of sitting and watching his peers eat lunch while he sat there, to make him motivated enough to start eating like never before! Up until that point, he could only nibble and swallow things like crackers or "meltables," but he would not swallow things like veggies, meats, or really any "real" food with nutritional value. But this year, preschool motivated him to try new things and eat real food!!!

I have to take a moment to be real honest, and I know this will sound crazy, but despite how deeply I loathe that tube, part of me began to dread the final process of getting off the tube because I knew it would mean a lot of extra work.  Even though logic tells me that once Mr Boy can chew and swallow solid foods, we could be done with the tube and let him thrive. But it's apparently not that easy. Since eating on his own, with me still giving tube feedings at night, he lost weight. He just does not have enough of an appetite to eat enough food on his own and grow, even though he can currently chew and swallow anything. So we are in a delicate dance… adding a little extra food through the tube after every meal, but not feeding him so much extra that he's too full to eat on his own. I love dancing, but this dance is tricky.

Several specialists have been working on the appetite issue this year with different drugs, routines, and ideas and Mr. Boy will be starting a Feeding group with other kids at the Children's Hospital of CO this summer.

As you can see, my neat and orderly way of feeding my child has been disrupted because this kid has the audacity to decide he's finally ready to eat. :)  With 100% tube feeds, I could control everything! I could give him the finest, most nutritious foods and know that he's probably the healthiest kid on the block. I could control calories and know he is getting enough to grow. All of the sudden I have to struggle with those "normal mom" problems like getting their kids to eat their veggies. lol. I never fought that battle because I could shove them through his tube. Easy peasy. This tube way of life, although difficult the first few years, had finally become "normal" to me and a safe routine.

Althought I never, ever thought I would feel it, I was reluctant for Mr. Boy to eat! The Me-from-2-years-ago would slap the Me-of-today for saying such a stupid thing. But I like being in total control of his food! It feels safe. Now I have to sit by and watch my medically fragile child eat things like… chicken nuggets… french fries… ok, and that's pretty much all he's eating every day right now. Haha. But that's painful… oh so painful. :) But more than that, his appetite isn't "normal" so I still must feed him in the tube and guess at his calories so he continues to grow and doesnt fall too much behind. It is tressful at times when I feel responsible for his growth. All that being said,  the immense JOY of being able to sit at a table with my son and have him eat what everyone else is eating, far outweighs my worries. AND, when I remember to lay my worries at the feet of Jesus and trust that He is watching over Mr. Boy and that He loves him even more than I do, then I can relax and know he's in the Lord's hands.

At this point I'm over my silly pity party and am thouroughly enjoying seeing Mr Boy try new things and eat "normally." Mr Boy will eventually eat all his food by mouth. And on that day, that glorious, blessed day, that the doctor decides to remove the tube and let that hole in Mr Boy's tummy close for good…  we will certainly throw a party. But in the meantime, we will rest in the peace that only comes from the Lord (you know, the kind that surpassess all understanding) :) and enjoy this season of discovering new foods!

We are so grateful for this 2015-2016 school year and Mr. Boy's incredible teachers!

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