Romy had been eating really well for about 5 weeks, and no longer needed her Ng tube for feed, but we were still using the tube for her medicines (one medicine twice a day and an additional one twice a day at weekends). But the Ng tube unexpectedly got ripped out when it caught on the slide as she went down it, and that was the end of that. Romy has had an Ng tube throughout the 18 months of treatment. They used to only last a maximum of 3 months, after which time they had to be changed, however at some point during Romy’s treatment the advice from the manufacturers changed and the new rule was that they did not expire -as long as they were functioning we could continue to use one. This was good news, as Romy seemed to have a really good track record of keeping them down. Some children seem to vomit them up/ pull them out if too young to understand they shouldn’t, or just end up having them dislodged in some way. But Romy was a pro at holding it in place when she vomited, and seemed to have good luck at keeping them. We therefore went some long stretches with the same tube in, hence the black colour of the tube where it has been sitting in the stomach acid! Although it was a little earlier than we were planning on removing it, there was no reason Romy needed it any longer, she just had to learn to start taking medicines orally again! One of her medicines is especially foul tasting, so we worked on teaching her how to take tablets and she is now really great at this. The Ng tube can also irritate the lining of the stomach so it was so nice for her to be free of it after all this time.
Helen & Tom
