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June 7 12:30am

posted Jun 6, 2010, 11:19 PM by Sean Molby

Tristan has been taking his feeds all weekend with no problems! They didn’t start Friday as originally planned but started Saturday instead, no medical reason for it; the intern didn’t learn how to count while in medical school and he added too many days on, it won’t hurt Tristan just delayed his feeding a day-very comforting to know that someone unable to count days on a calendar has medical say in my sons care but oh well J !

 

They started him out on 5 mL continuous drip for 3 hours, that is only a teaspoon, they did that for 8 feeds-so 24 hours- then they bumped him up to 12 mL for 3 hours for a few feeds, then 14 for 4 hours, and then they will do a slow bolus(all at once) feed of 45 mL over 2 ½ hours at 1:00 am (June 7) then wait another 1 ½ hours and do another 45 mL bolus over 2 hours (this will be a 5 am). After that they are not sure how they will proceed, they want to see how he will do with what he has been given so far to make a decision. They are going much faster than we had thought and that is kind of nerve racking but so far Tristan has handled everything well. He has only had one stool so far but there were no traces of blood in it so that is good.

 

No other big news. For the next week or so it will just be a waiting period and we will have to see how Tristan does as he is the boss. Sean and I have talked and we did make a tentative decision to for go the GI surgery and just keep Tristan on a NG feeding tube (through his nose) we have not discussed this further with the doctors yet but it is ultimately our decision and we just feel right now another surgery is just too much for Tristan and may compromise his ability to recover from his next open heart by-pass surgery here in a few months. As that will be his most dangerous surgery of all we feel it is important for him to be as rested and for his body to be stress free for as long as possible. This decision may changes as does so many things but for now that is what we have decided on. Hope everyone has a great weekend! ~Christy  

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