May 26, 2010

adventures in tube land...

good morning dear reader...

as you know, Harlow came home recently and is being fed by bottle and by tube. it is not an ideal situation but with the energy levels that he has, there is really no other option. with four hourly feeding, the three feeds during the day are via a bottle and he does really well at these. mostly. the three feeds at night are with the tube. they're tubed so that he has enough energy to feed from the bottle during the day.

when his energy levels are where they are supposed to be, he can knock off 140mls - 150mls without working up a sweat. 20 minutes and she's all over, red rover. thats not to say that all day time feeds are a cinch, no no. there are still feeds where he will take 20mls and quit. or 10mls. or 40mls. whatever the amount, it's not nearly enough and the rest of the meal has to be delivered al-la-tube.

so ... things were going along ok, hop skip, hop skip, skippedy-skip, and then we hit a bump in the road. a bump ... more of a small hillock i should think. he pulled out his tube. ~poof~ just like that. one moment it's there, the next, ... its gone. yikes, but didn't he holler!! just imagining doing that and i have a tear. the result is, its kinda hard to feed him.

he had that tube out for 2 days. he was doing great there to start with, and we're thinking "hey, check this out, he may not need that tube forever after all." haha... yeah, right. about three feeds in he started going down hill again. you could see it, each successive feed getting less and less. the little bugger. it just shows tho, that he cannot do this unaided.

so, two days later, the home care team visited and the tube is back. just as well. today ( about three days later ~ you can't create genius like this overnight! ) has been ... difficult. he took 2/3 of a feed at 10am, 60mls at 2pm and then maybe 100mls at 6pm. he's been all over the place. if he hadn't the tube, he would be going hungry and not growing. all kinda important things really.

the tube is not natural, it is an intrusion and unwelcome, but ... it has a part to play in keeping him alive. keeping him alive is a good thing.

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