Cheeky has been pretty happy playing at home, mostly inside during the heatwave. His NG tube is one factor keeping him from summer fun (second factor = Broviac external port) and his NG has behaved itself pretty well until today.
His tube pulled out last night while he was sleeping since he sweats the tape off easily (and we replace the tape often). We lobbied to trial a day without the NG tube, but that was shot down. He can’t reliably take his meds by mouth and eats/drinks almost nothing on his own.
Naaman normally has his NG tube changed out when he is asleep under anesthesia… because he understandably hates it. It was a really tough clinic visit. After lots of vomit and four people holding him down and the new NG still not placed properly, we tried light sedation. It was not much better but we got it in place. Hoping this one stays put.
While on the subject of feeding tubes, we should point out how awesome these little pockets are. Another tubie mom (@tubiepockets) makes them on Etsy and they make life with an NG so much easier. We tuck the tube in when he’s not using it and loop it through to stay out of the way during feedings.
2 thoughts on “NG tube troubles”
Omg that poor little guy.
What a brave little boy, a brave entire family. Love you all.