Feeding Tube-To tube or not to tube? That is the question! Thoughts for Parents that are unsure

The following is totally my experience with MY child, which I'm sure you know, every situation is different! So the following may not pertain to you and thats ok! :)

And the question is before you...To tube or not to tube? The Doctors seemed to put it in our hands. And really, I didn't understand what a feeding tube did and I kind of resisted in the beginning. I regret the hesitation now!

First of all, I should say that Griffin is a pretty easy going kid, and not one to rip out IVs, ports, etc so I figured he wouldn't pull out the tube. Second of all, we were having A LOT of trouble giving meds. The only things he wanted to eat were egg salad sandwiches, cheese and popcorn, so you could hide pills in there and if we hid liquid meds in his juice, he noticed it right away and spit it out! The FIGHT to get him to take meds 50 times a day was exhasting for both me and my child and just didn't seem worth it. And I knew these meds were important and he needed to take them! They were not up for a debate, but try telling THAT to a 2 year old! We tried EVERYTHING.

In the end, we opted for the feeding tube for meds purposes only! And my gawd, BLESSING IN DISGUISE!

Instead of a half and hour of physically fighting with my child, actually someone holding him down, while I pried his mouth open, it turned into a couch snuggle session where we would be reading a book and my hubby would unhook his feeding tube from the back of his shirt, put the meds in, flush the tube with water, pin it back to the shirt, DONE! OH MY GAWD! It changed our lives!

A feeding tube is a realtively painless procedure. The Nurse puts lube on the end on the tube, the child takes a deeeeep breath, (some kids choose to drink water at the same time, helps guide the tubie down) and the nurse pushes to tube up the nose and down the back of the throat to the stomach. They then test the fluid coming out of it to make sure the tube is not in the lung. Then they tape the tube to the child's face. They then take the guide wire out of the middle, so now the tube is much squishy! The tube is a bit long for children, so we would loop it with a bit of tape and pin it to the back of his shirt to keep it out of the way. It was uncomfortable for him for about 2 seconds, tears would for in his eyes, and then the procedure would be over and he would go back to playing!

Griffin actually got FOND of the "tubie" as we called it, he liked having it, he understood it avoided the meds so he was happy! The only time he pulled it out was in his sleep (by mistake) when the tape on his face got loose. And us as adults pull it out at least six times, mostly the tube would get tangled in with IV lines or seatbelts or whatever and we would mistakenly pull it out. Griff would be mad and look at us like, "look what you did" lol Grandma also pulled it out while wrestling with Griff on the cot at camp while pretending to be tigers. It was quite the story as we had to tell camp leaders, camp nurses, and hospital staff that a tiger did it. Griffin thought is was WAY too funny!

Later on in his treatment, has the chemo and Rads caught up with him, he began to lose weight and not eat enough, then a feeding was needed through the night. We hooked him up to a feeding pump with pumped food a little bit at a time throughout the night. It was WONDERFUL! You didn't have to worry if he was eating enough, or if he was getting enough of the different food groups, it was just silently feeding my boy as he slept. We found his belly got less upset and he woke less throughout the night. And when he had CDIFF, there was a worry that he could get dehydrated, I would just pop some Pediasure in his tube, didn't have to force him to drink anything he didn't want too!!!

Even when his treatments were done, and his feeding tube removed, he would still ask about where tubie went! And if I did have to give him some meds, he would wave his hand to his back and say, TUBIE! Like don't put it in my mouth! Use tubie! LOL

Some downsides are:

Griffin's face started reacting to the tape stuck to his face, like to the point that his skin was breaking down. Its important to find the kind of tape that works for your child. Every skin type is different!

Some meds have a strong odour or flavour to them, or if the meds came right out of the fridge, it can be shocking if your kid isn't expecting it! Make sure you warn them, because something hitting the bottom of your stomach without warning can be jarring! LOL

Have several CHILDREN"S feeding tubes in your stash of med supplies. You would surprised how many small hospital so not stock them, or run out of them etc. Have extra tape, stickers etc for emerg tubie taping in the middle of the parking lot.

Throwing up can have a gross effect of throwing up the tube. Yes, it has happened (never to Griff thank gawd) But the tube comes up with the stomach contents and his now hanging out of the mouth and still in through the nose. So now you have to pull the dirty, vomit/stomach acid covered tube out through the sinus and nose...ewwww...but that doesn't happen often or anything!

Another issue would be the tube itself, being there. Your child will get stared at, babies will try to yank at it, children will ask about it. Some cancer parents would get upset. But just like any other medical disability, instead of getting insulted, or awkward, turn the situation into a learning experience. Usually the other parents are embarrassed that thier child pointed it out and are VERY greatful that you are willing to talk about. My usual speech was "This is Griffin's feeding tube, its like a straw that goes down to his belly. He doesn't like to take his medicine so the Doctors had to put it in there. Do you like to take your medicine? No? Neither does Griffin. Would you like to touch his tubie? Do like his cool 'cars' sticker that he has on the tape on his face? The tape holds the tube in place, cool eh?" You can usually judge on the kid if he wants to continue the conversation from there. And the parents either keep the conversation going or greatfully pull thier child along. I've never had a bad experience out in public with an ovbiously cancer kid in tow. The world is what you make it. Choose to make it a positive experience. Others will follow!

So in short, it totally depends on your child, and your situation. But if you are asking my opinion...GET IT!