Tube feeding?

#1 01-31-2007, 01:07 PM

So are most of your kids tube fed as well? The dr. says regardless of wether we have to get Linden trached, unless by some miracle whatever is wrong with him is immediately fixable, he'll have to be tube fed. He aspirates 80% of the time now. So do most kids with trachs get tube fed? Will the trach affect the amount he aspirates or not at all? Still just trying to figure all this stuff out... but I have to say, after being faced with the trach, tube feeding seems like a walk in the park.
thanks,
Courey

cariaad · #2 01-31-2007, 01:22 PM

Of course each child is different. Allison is tube fed because she had horrible reflux we couldnt control for a long time. She got so orally aversive, and the caught rsv and was so sick, that a feeding tube was our only option. She is 6 now and still tube fed. But she is beginning to eat on a more regular basis, even if only in small amounts. Deb

LKN · #3 01-31-2007, 01:33 PM

It depends on the child. My son is not tube fed--he had an ng tube for a couple of weeks in the NICU, but it was out when he came home at 1 month old. He has been trached since birth. He doesn't aspirate.

I'm not sure how the trach will affect aspiration. I would hope the trach will help. Caring for the trach is not that bad after you've dealt with it and been trained how to care for it.

I'd keep asking the doctors questions--eventually they'll give you some answers. Good luck. You should find a lot of support here.

willsmom · #4 01-31-2007, 02:49 PM

Will had to get a Gtube before they would let us come home from the NICU, he would only take about 70-80% of his feeds orally. He doesn't aspirate though, just was too weak and small to take them all. He is pretty much totally oral fed now, we just use the Gtube to supplement. But every kid is different. And after this LTP surgery who knows, we may have to start from scratch on his feedings.

TanyaLea · #5 01-31-2007, 03:14 PM

Cody had a NG tube until he was about 11.5 months old. He was trached at 4.5 months. He doesn't aspirate, that we know of, he was just a slow eater and didn't eat a whole lot.

Mom2TwinsPlus1 · #6 01-31-2007, 03:31 PM

Emma has been tube fed her entire life. First NG tube in the NICU and then a foley cath feeding tube and now a mickey button. She has no swallow or suck reflex so that is why she has hers. Same reason she has the trach, not swallow causes spit to get in her airway. She CAN mouth and nose breath but after several hours its like she is "drowing" in her own spit.

lovemymak · #7 01-31-2007, 04:00 PM

Keturah actually got her G-tube at 7 weeks. She didn't get her trach until she was 9 months! Her respirations were so fast from her BVCP when she was a baby, that she couldn't coordinate the suck, swallow, breathe, so they put in the G-tube so she could come home.

Luke (Lizzykewlness) doesn't have a g-tube and he eats pretty well! I couldn't believe my eyes when I saw him eat chicken, rice, and vegetables!!!

I think if he is already aspirating that much, then it is probably a good idea for him to get one.

Sarah

suzanne2545 · #8 01-31-2007, 04:10 PM

Parker has a G Tube. He is trached for vocal cord paralysis. He has had two feeding studies and he aspirated on liquid so it is thickened when we bottle feed him. He is now capable of taking all of his feeds by bottle, but at this time the amount of cereal we have to add amounts to 1 1/4 c. per day. Way too much for a 3 month old. So, he still gets some of his feeds by tube so he doesnt' have to take in so much cereal. We go for another feeding study in early March, the hope is that he has developed enough to coordinate his suck and swallow and not be aspirating.

Also, they've told us that unless something drastically changes, they expect us to be able to introduce solids at the same time and rate that you would any other baby. In our case, there is a higher risk of choking to watch out for.

My reaction to the feeding tube was the opposite as yours. I understood why he needed it and didn't fight it at all, but I had (and honestly still have) a huge mental issue with it. Food and eating is such a big deal in our home that the thought of a child not being able to participate in that made me so sad I could hardly stand it. I know children grow up not knowing any different and I know that we would make a non-issue in our house, but it was seriously the biggest emotional hurdle I had to get over in this whole thing.

Good luck.

Suzanne

indiemum · #9 01-31-2007, 04:12 PM

Believe it or not, I was so grossed out by the thought of a G-tube.....I was more accepting of the trach. Indie was G-tubed at 10 weeks and after bottle feeding with massive aspiration for 3 weeks, I was relieved. The g-tube has become our best friend. It would be strange to feed Indie any other way. She is almost 5 and has never known any other way although she is taking a definite interest in oral feeding.

Indie may get the trach out one day but the tube feeding could continue for life. I am totally fine with that. Trust me as well, the g-tube is Disney Land compared to the trach. Good luck with your decision. Indie even wears a bikini in the summer time and could care less what anyone thinks.

Kelly

scm · #10 01-31-2007, 04:55 PM

Max does not have a g-tube but there are many times where I wished I had that easy way to get food/calories in.
He has just never been that interested in eating and it's loads of work to get him to eat. there were many times i was just waiting for the dr. to suggest it and I would have done it no problem.
I'm not sure if his eating issues are due to the trach or if it's a preemie issue.
aspirating 80% of the time sounds like it could lead to trouble, and I wouldn't hesitate to go forward with the g tube.