Follow up appointments

Two weeks on Alimentum RTF and 1week since dismissal from the hospital, we begin our follow up appointments- Pediatrician, then Dietitian and GI.    

In one weeks time he has gained from 13.4kg to 13.9kg. Doesn't sound like much does it?   It's a pound! (1kg=2.2#)  A POUND in 1 week!!   Ok, so there is a possibility of some slight discrepency with hospital scale and clinic scales but not usually too much if weighed in the same way (dry diaper, only wearing shirt).  Even with a possible discrepancy, there would still be some gain.   It is a GOOD sign.  It is an amazing sign for our little man, who struggles for every ounce and malabsorbs so much when he's reacting or not tolerating a food.  

We briefly discuss the G tube. We have been discussing it at home.   Our initial thoughts are the same as any parent in our situation, we don't want him to have to undergo surgery and have a medically implanted device and all the medical cares that go along with that, every day.   But we do know it would be better for him long term.  FPIES isn't going away- we have a small victory here with the Alimentum RTF, with him tolerating a dairy hydrolosate without an acute reaction; but we are by no means going to give him dairy, and we know (from January trials) that his body is still quite reactive to new foods.  We do not know when we will be able to advance his diet.  Alimentum gives us a base so that trials do not need to be rushed, we can take things at HIS pace. But since he won't drink the Alimentum, it needs to go in him via a tube.   The NG tube has been ok- he's been great with not pulling on it but it isn't incredibly comfortable for him and we need to have it taped to his nose- the tape needs to be changed almost daily and he really, really fights that.  

Next up in the week, we visit with the dietitian tomorrow and get a better idea of where he is at with his nutrient intakes.  I track his caloric intakes and he is well within his 1300 calorie needs and gets 1200-1400calories/day; but I don't calculate out all his nutrients!  So, it's good to have that looked at as well with the ~43oz./day of Alimentum RTF he gets hoping it is enough.  The NG feeds have been going well, he gets 4, 6oz. "feeds" a day and he still takes his Hemp milk bottles 4-6x/day and then he also gets ~20oz. of Alimentum RTF continuous drip overnight.   It is this overnight drip that we are not sure he is tolerating.  It seems to be causing some uncomfortable gas.  

Overall, he seems to be doing so very well.  It is amazing the differences we are seeing, the little boy we haven't seen in many months- towards the end of summer he was sick and this fall/winter with the TPN has been challenging all on it's own.