Reply to Infant feeding tube experiences?

Forum Index » Kids With Special Needs and Disabilities

Reply to "Infant feeding tube experiences?"

Subject:

Emoticons





More smilies

Text Color: Font: Close Marks

[quote=Anonymous]I'm back!

My now teenager had a g-tube from 9 months until 3.  We did not do an NG tube, because the issue was severe reflux and aspiration, and NG tubes aren't great choices in that circumstance, so I can't talk about the transition, but for is it was absolutely the right decision.  He began to gain weight, and height.  His breathing got so much better.  He began sleeping so much better, and once the vicious cycle of aspiration, leading to labored and disorganized breathing, which complicated his swallow and caused him to aspirate, was broken, he figured out the eating thing.  He wasn't using it for calories by the time he was 2, and then used it for water overnight for another 6 months because he got the hang of solids faster than liquids.  Then we kept it for another 6 months to get us through flu and RSV season before pulling it out.

For daycare we did Easter Seals in Columbia Heights.  One challenge that we had was that my kid needed to be fed very slowly because of the reflux, and licensing has pretty strict rules about not restraining kids, and my kid has always been very active.  He had classmates who weren't mobile and had feeding tubes, and they could feed them, but mine kept crawling and then walking away from the pump.  At home, I'd put him in the stroller and we'd go for a long walk while the pump ran, or I'd just follow him around with the pump, but it limited the hours he could be in daycare because they could really only feed him during nap time. That lasted about 6 months, before we were able to get him to tolerate a speed where he had longer periods off the tube, and we could feed 14 hours over night, the 2 hours at nap, and otherwise just do some snacks by mouth.   But you may find that you are able to bolus feed him, and that that isn't an issue for you at all.

Let me know your specific questions, and I'll come back!  [/quote]

Options

	Disable HTML in this message
	Disable BB Code in this message
	Disable smilies in this message

Review message

Search Recent Topics Hottest Topics