G-tube

You probably read that title and thought, "What?!"

I know, we kinda feel the same way. We never thought he would need one, never thought we would choose to make this decision. But after three years of nearly no progress with eating, we felt it is the best option for us, and for him.

I was told about 18 months ago at the feeding clinic that a g-tube would be best if Truitt either dropped weight, failed to gain, or for our sanity. Well, let me say he is in the 50-75th percentile for weight, but our sanity is being jeopardized. It takes so long to feed him, and to this day he still puts up a fight with the bottle. It's exhausting. All we do is feed Truitt, or that is how it feels.

A big part of our decision was feeding Truitt in public. Anytime we go somewhere we have to leave early to make sure we get home to feed Truitt. Most of the time, he has NO interest in eating away from home. He cries and we cry on the inside. It's miserable. So therefore, we rarely go anywhere as a family besides our family or friends houses. Those of you who know me well, I love to go out and have fun doing things with my family. It's tough.

Last week we had a consult with a GI doctor. We wanted to learn all about the g-tube, and the pros and cons associated with it. Many parents of kids with Truitt's diagnosis have told us it's the best thing they ever did, but I wanted to hear the details from a professional who knows Truitt's history. I was afraid we would walk into the appointment and they would tell us he wasn't a candidate because of his good weight, and he does eat orally.

The doctor was 100% convinced that a g-tube would be very beneficial to Truitt. He told us that kids like Truitt are typically much healthier with a tube than without. That surprised me to hear. It helps to keep them well hydrated, far easier to give seizure meds, and studies have shown are less likely to be hospitalized for illness. All of those things have been issues for us in the past.

Truitt has been hospitalized twice for dehydration. Even a minor cold is enough for him to not drink at all, and barely eat. It's too much work for him. He was also admitted for constipation, which again is caused by not getting enough liquid. We now know constipation causes him to have seizures too. He takes three seizure meds per day, two of which are twice a day. Those two meds that he takes twice per day are both supposed to be taken with a full glass of water. That almost never happens. Ever. Most mornings he takes both meds with no liquid at all before school.

The GI doc and Truitt's Neurologist have warned us that if he doesn't take them with enough liquid they are very hard on the esophagus, stomach and liver. So a g-tube would prevent any further damage to those intestines, assuming there is probably some damage that may have already been done.

Greg and I have done lots of weighing out the good and the bad. The only bad thing is of course infection, which we were told is very uncommon if you keep the g-tube sight clean. Also, the part I struggle with the most, my perfect little boy having an open hole in his belly. It's nothing I ever wanted for him, but his life is different in many ways and this is just one small thing that comes along with it. And as always, everything is worth it for his quality of life. And ours. We have to do what is best for us too.

We still were going back and forth about our decision, I just couldn't convince myself that all of this is worth it. Putting him through the pain of the surgery is the hardest part to get past. But we took the boys to the Zoo yesterday, and left with a starving Truitt. Well, Greg, Beckett and I were starving too so we stopped for lunch. Truitt decided to scream and cry with each bite we gave him, so we ultimately rushed through lunch with a very unhappy boy and left stressed and certain of one thing...

Yes, it is that time. He needs, and we need the g-tube.

It is not something we have taken lightly, and we have been preparing ourselves for this reality for almost a year now. He goes in next week for an upper GI to get a good look at his anatomy to prepare for surgery. The surgery will then be a few weeks after that. It will be a hard adjustment, but we pray we are making the right decision. We know it isn't permanent, but for now I think it is in all of our best interest. I am so glad the doctor supported our thoughts and encouraged us that we are doing what is best for our son.

I hope we have your support too.