Hi all,

Julia got her mic-key button last week and it is wonderful thus far, compared to the NG tube.

She did not have a nissen and doesn't seem to have reflux (is on meds but has never really spit up). She tolerates bolus feeds fine and is currently on 3 boluses during the day and continous overnight. Our ultimate goal is to get her on total day feeds and no overnight which resembles a normal eating schedule.

We have a total amount of ounces she is supposed to eat each day. My question is, for your kids, did you just adjust the bolus amounts, feed rates etc on your own based on your child's tolerance?

Right now her boluses run at 95 mls/hr which is long so I am working on increasing that. She also receives most of her feeds overnight so we are also working on giving her more in each bolus. I wasn't given a whole lot of guidance on how to adjust things and don't want to make her uncomfortable.

I have pretty much given up the idea that she will ever bottle feed (she is almost 8 months old) and hope that her speech therapist will start spoon feeding in a few weeks.

Thanks!!!

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Kimberly

DD Sofia 11-20-05
DD Julia 05-04-07

Hello.
Nick is now 20 and has had a Mic-key since he was six years old. I give him three bolus feeds a day (250ml ensure plus) and overnight he has 1500ml Ensure Plus which runs at about 130 to 150ml/hr depending on what time he goes to bed and when I hook him up to the feed. When he gets up in the morning if the feed is not empty he goes without it, it does no harm and he is the right weight for his height. he will always be on an overnight feed as there is no way I could get the amount he needs into him just doing three daily bolus feeds.
Pauline

Talitha is 2 and has been tube fed since birth. She also has a mic-key which is quite easy to manage. Her standard feeding program is bolus feeds (not on the pump - just gravity fed) of approx 120 ml 3 times a day and then gets 600ml overnight at 68ml per hour. I have been tweaking her feeds a bit as we are trying hard to get her to take food and drink orally. Basically I work on whatever she can handle, trying generally to meet her overall daily need of around 900ml in 24 hours. Sometimes she gets less, sometimes a bit more if you include oral feeds/drinks. She is gaining weight at a good rate - she is weighed once a month just to make sure.

I am starting to increase her day bolus feeds or give her more by mouth (depends on the day ) and to reduce her overnight feed as I find that is now causing us problems because she is so active at night. She always wakes during the night and gets tangled in her tubing which means I am up and down quite a bit or the pump feeds the cot if she pulls it all apart. The other night for the first time ever she managed to pull so hard her whole mic-key came out and I had to put it back in. It is very easy to put back in but she was not impressed. I must remember to check the water in the balloon a bit more often. Used to check it once a week but have been really slack lately. It still had around 4ml in it - should have been 5ml

I think that the most important thing is working on what Julia can handle - if your goal is moving to day feeds only, increase her day bolus feeds gradually as she can handle it and reduce her night feeds. You know her better than anyone. Also if she is taking anything by mouth you can kind of factor that in and maybe give her less overnight. It really is up to you and up to what she can cope with. You will soon know if she becomes uncomfortable and you can change what you are doing. If you are moving to day feeds you also might want to do more feeds during the day - thinking about breakfast, morning tea, lunch, afternoon tea, dinner and supper - so maybe 3 bigger feeds and some smaller ones. Talitha can't handle too much at once so I am working on increasing what she can take in one feed as well as giving her small amounts in between meals. For us it is a long, slow process but we are making progress!!

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Karyn
Mum to Nikki (19 Jul 89), Stefanie (3 Sep 96), Joel [18 June 98] and Talitha (DS) (18 Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14