Update: Son refusing NG tube

[LJS]

So, after 6 weeks really successful on the nightly NG (not EEN, but EN), son went away for a week to visit my ex inlaw, with his dad. Did not send supplies (our doc agreed to this) as there is no way I could trust exH to properly take care of this.. so now that son is back he is refusing the tube! It's a nightmare every night, and I've just about given up.. so frustrated as he was doing great. He is going away to overnight camp for a month, and will be drinking 1-2 cans of peptamen jr per day (with flavorings added in) and when he comes home, we have bloodwork scheduled and an appt with his doc.. but I'm so disappointed, esp after he did so incredibly well and finally looks healthy..

 

[crohnsinct]

I could imagine your disappointment. But let's celebrate the six weeks! Is there any way you could get him to drink more to make up for the lost nighttime feeds? How does the doc feel about your son's decision? Perhaps doc can talk to him and get him to reconsider?

 

[LJS]

Doc doesn't know yet.. b/c it's only been the last 10 days (we've managed it about 4x in teh last 10 days), and since doc knows he's leaving for camp for a month, I'm not even bothering him with it.. I just hope that he does the drink while gone..i've spoken to the camp nurses and they are onboard..and thankfully he has gained 5 lbs.. more than he's gained in 5 years!

 

[Tesscorm]

That's tough! Once kids dig their feet in, it's tough to move them! Can you remind your son of the weight he's gained and how he's likely to grow so much more quickly? Would that be an incentive for him?

Another benefit for my son was that I didn't nag nearly so much re his diet!! He's a picky eater, so I've constantly nagged for YEARS about his diet... knowing he was on EN, I barely worried if he was getting enough nutrients from him diet. Can you make some sort of compromise with him in giving him some leeway with his diet, letting him skip a food he doesn't like in exchange for an EN feeding?

And, then there's bribery!

I can understand your concern... it really is reassuring knowing that your child is getting their nutrients! :ghug:

 

[my little penguin]

Yep lots of bribery for DS
From everyone .

 

[my little penguin]

Can he drink it though ?
We used that option .
If you drink xyz for today them no tube .
Take it day by day .

 

[CarolinAlaska]

When Jaedyn's NG tube came out she refused the nightly NG tube (insertion was traumatic the first time and she had to have it put in with sedation). She was given the choice: NG tube or G tube. This upset her so much she countered that she would drink it. She had to sample many formulas and finally ended up with a mixture of two formulas to make it both palatable and digestable. She knows if she doesn't drink it, she'll have to face the tubes again. I'd recommend trying to find a solution where your son can just drink a certain number of cans/day instead with the agreement that if he can't do it he go back to NG tube or consider a MICkey button...

 

[Dexky]

How old is he LJS? Were you going to try to keep the ng tube going while he was at camp? I hate to say it but your ex may have given you an opportunity to preempt what would likely have been a problem. When does he leave for camp? Maybe, like Carol suggested, you'll have time to work out how to best supplement his nutrition with something he finds palatable. Good luck!