To G-Tube or Not to G-Tube: That is the Question
Darling Boy has a mild cold and he’s been coughing almost non-stop today. This despite the cold mist humidifier, saline solution and benadryl. He really hasn’t eaten much either. I just managed to get a little wonton soup into him. Then he did his collapse- over-his-legs move. It’s hard to describe but imagine sitting up, taking a bite, and then your body can’t hold itself up anymore. Wham and you fold over so that your head is down on your knees. It’s not really conducive to eating. I could put him in the wheelchair and strap him in but he doesn’t have the energy to sit up.
This is when a g-tube (www.umm.edu/ency/article/002937.htm) would come in handy. That’s a tube that goes directly to the stomach so I can feed him via liquid nutrition. I could also get all his anti-seizure meds in him and he can’t spit them back out at me. Despite Darling Boy’s cognitive difficulties, he sure can figure out every type of food that I use to hide his meds. I’ve taken to crushing them up and putting them in liquid. But it is not the most accurate method because he will spit this out too. I can’t blame him, the stuff TASTES LIKE CRAP.
Last year, his neurologist suggested a feeding tube and I must admit it scared me and made me feel like crying. Here’s another loss of function for a kid who could eat like a man when he was younger. He could chew and swallow without any difficulties. One of the clues that we had to his muscular dystrophy diagnosis was the lessening of his swallowing ability. Last fall, he had a swallow study and he is now at risk for aspiration which could lead to pneumonia. He can eat food chopped very small and blended foods. Also, we have to thicken his liquid because if it’s normal consistency, it can penetrate the trachea and get into his lungs. The loss of physical function is a hallmark for the muscular dystrophies. Darling Boy has very slowly been doing this. He’s been a medical mystery because he does move a lot but yet doesn’t have the balance to stand and walk. He is a Wiggly Guy. There’s always a body part moving, some he can control but most that he can’t All this movement burns up a lot of calories thus the need for good nutrition. He can also dehydrate pretty quickly when he gets sick because it’s so hard to get fluids in him. (Last year he was at the ER 3 times in 2 weeks for dehydration.) Even though he gained about 10 pounds and 5 inches this year, he’s still a scrawny guy.
There are pros and cons to having a g-tube. The most positive being that he will get good nutrition and accurate medication dosages. But there is also the possibility of him pulling it out, Danny loves to pull on things and I’m afraid that he will get hold of it and pull on it. I did find that there are belly bands that you can place over the g-tube for just this contingency. Then there’s the surgery. I really don’t want him to have surgery if I can help it. Really, who wants surgery?
Tomorrow if he’s well enough to see good old Dr. B, our brilliant neuropsychiatrist, we will discuss this again. At this point, I think I’m leaning toward the g-tube. It would certainly make his nutritional intake easier on days like this. My Lovely Husband and I have hashed this out throughout the past year. We know it will be the best thing for his nutrition but we are scared that he will pull it out and be in pain. I know this is a simple procedure and there are kids who play sports and have g-tubes. But Darling Boy doesn’t fit into this category. He isn’t aware of safety issues and won’t understand that pulling on the button could hurt him. Although he’s very aware of his surroundings and I think he’s a genius considering the malformations in his brain, he is still cognitively disabled. And he’s strong. So, we will probably see a G.I. doctor soon to discuss this next phase of care. I am definitely leaning toward going forward with the procedure. But here’s the rub, (you knew I would get that Shakespeare reference in) it’s one more way to see how he’s losing function. My Lovely Husband always says we get used to one thing and then something else happens that we have to get used to all over again. There is no stability or getting better, now it’s about keeping him comfortable.
In the long run, that’s what we’ll do. Take everything into consideration and make the best decision possible for Darling Boy. And if it turns out to be the wrong decision, at least the g-tube can be taken out.