Muddy Picture

We knew we’d have things that would come up in the trial/challenge to muddy the picture, we did not anticipate Little Man completely refusing the formula and the decision made for us to starve him to get him to take it.  We did however anticipate the NGT (nasogastric tube); we had discussed it previously with the GI- how he may need it to do the trial, to be sure he consumes enough for us to call it “safe”, we also discussed a Gtube (a feeding tube surgically inserted into his stomach) if the Alimentum RTF was an FPIES pass but if he does not accept it…we know it will at least need to be a supplement in his diet. He has hemp milk that is providing the calories and protein and fats he needs, but it is lacking in some nutrients- the nutrients the Alimentum would be able to provide.   We haven’t done the math yet on how much he needs of the Ali. 

The Alimentum RTF trial continues and Little man continues to get round the clock “feeds” via the NGT of the 1oz. Ali+3oz. Hemp milk mix. He appears to be tolerating it well and in the first 24hrs. with 8oz. of Alimentum in.  This is a good amount, but because of the events of the day before , prior to the NGT, we are no longer at a baseline  and we’re not sure if it’s the Alimentum slipping him downhill or simply his body trying to recover from the previous days’ events.    

We are optimistic of his progress, Wednesday morning his cheeks are rosy, he slept well overnight, wakes up ready to play, and enjoys some playtime  when his brother visits.    So, we began to discuss the next 24hrs.  at rounds on Wednesday morning, we express and discuss how we feel we need to increase the Alimentum he is getting- because of the symptoms he is presenting with that are unclear if they are building FPIES or leftover from the stressful beginning days.  I am hopeful it is just the stress, and am encouraged that we haven’t seen any of his “classic” building symptoms of pain, agitation, decreased appetite and disturbed sleep.  But I am troubled that we jumped right into lethargy, pallor and cyanosis.  But, even though these are seen during an FPIES reaction (acute or chronic), they alone (without vomit or diarrhea) are not defining criteria; and especially not now for little man because of the stress his body has been under.   So, we press on as planned but decide that we should continue to increase his doses to see if that makes the muddy picture clearer.  We will increase to 2oz. Ali RTF + 2oz. hemp milk for the next 24hrs.